I know a lot of people have been patiently waiting for an update on how things have gone for me.

This year has been a whirlwind, but finally, I am starting to feel like myself again. (Updated as of 7/8/21)

I’m doing wonderful actually!

• It has all been a crazy adventure with wonderful support from family and friends.
• Surgery went great on March 11th 2021
• Pathology looks optimistic.
• I should be fine for a decade before the cancer becomes more of a problem.
• I’m 80% recovered and am going to stop being such a hermit and reconnect with people and re-enter society.

Personal Life

Many people know me, but I typically keep a fairly high wall between my personal life and my public life. Sharing what has been behind the wall for the past few months is a new experience for me.

I have felt constrained by the need to write a formal update before reaching out to individuals because I know once I start talking to people again, that will become a full-time job! I have had so many people cheering me on and wanting to stay connected. Getting an update done first will hopefully make it easier to reconnect with everyone.

It will be a long time before I am able to finish making the rounds of reconnecting and individually thanking every person who was so helpful in supporting me. There were so many of you!

Cathartic

Writing this update felt awkward, but it was long overdue and ended up being quite cathartic.

I heard a psychologist saying earlier this year that if you are still having a strong emotional response to things that happened over 6 months ago that you likely haven’t processed it. Trying to write this revealed to me that I had survived and healed but had a few things to come to terms with. This psychological and emotional healing ended up being very important.

I also felt the burden of trying to remember all of the details of the events removed as I committed them to paper.

My first draft of this was over 20 pages long! As I processed and worked through it all I determined that much of the original draft was more useful for me as a personal diary. So I reduced it down to what you are about to read.

This is what I figure some of my friends and family would find interesting.

I will explain what happened including
• the initial symptoms that later led to a brain tumor diagnosis
• the surgery, to the post-surgery recovery
• the follow-up visit 6 weeks later with oncology
• and an update on how I’m doing now.

I hope this can tide you over.

But First…. Thank YOU!

Thank YOU!

Thank YOU for all of the support!

Thank you especially for the patience in allowing me the space to keep myself isolated as I recover.

Your kind messages and GoFundMe donations were a huge part of finding some peace as I recovered!

Go Fund Me

Thank you to everyone who supported me financially via Go Fund Me.

My normal behavior after something like brain surgery would have been to bury myself in working hard and staying busy as a way to try to feel like I had some control over my life.

Your financial support served as votes for me to take my time and give myself space to heal. Without that encouragement to just sit and breathe, I’m not sure where I would be today.

Having to worry less about finances also helped immensely.

With the money raised, I was able to cover the trip out and back for brain surgery and the return follow-up visit and medications. Thank you! I will have ongoing care over time but this up-front assistance really made things better for me.

I haven’t had a chance to individually thank everyone yet because I have been focused on recovery but I’ll be making the follow-up rounds slowly but surely.

People from my past, business connections, jiu-jitsu friends, friends of friends, family and so many others showed their support in VERY meaningful ways.

I saw and appreciated all of your messages and support more than you could know. It was so nice having a wave of positivity and people wishing me well going into a hard time like brain surgery and recovery!

Thank you!

Parents

I really want to think my parents for helping me set up a communication bubble protecting me from the outside world and being a “middle-man” so that Lisa and I could focus on getting to Duke and the surgery and healing and not fielding inquiries.

They were amazing!

From being my own personal press secretaries to setting up the Go Fund Me, and coordinating communication and support they were such great support!

Lisa

Before I get too deep, in case you somehow missed it, Lisa is an amazing addition to my life!

Last year, Lisa and I started dating and our relationship has been amazing. Somehow that amazingness overshadows everything I am about to recount and although it was hard and reads as terrifying, it never really felt that way to me because of our connection.

She is a big reason that everything has gone as smoothly as it did. She has selflessly shouldered a lot of the burden of helping me as I was healing. I am so glad she is part of my life.

I know that sounds sappy, but I think there is no way I make it through everything as well as I did without such an amazing woman by my side. Not only is she an amazing girlfriend she was instrumental in helping me get quality care. (If you need an awesome Nationally Board Certified Health and Wellness Coach you should reach out to her for sure!)

It was Lisa’s connections with Duke that helped move our search forward with amazing doctors!

It was Lisa’s BRILLIANT suggestion that I DON’T GOOGLE ANYTHING and that any information inquiries go through her. If I wanted to know the prognosis for brain surgery, I didn’t go rooting around the internet reading terrifying anecdotal stories, she would look through peer-reviewed sources and tell me only what I needed to know.

If you are ever in this position do what we did!! Have a designated Googler!

She drove and cared for me on our trip knowing that maybe after surgery I wouldn’t even be able to walk and committed to finding out a way to make things work going forward. She is amazing through and through.

Lisa wrote a wonderful account of our story starting with when we arrived at Duke through the surgery and being released from the hospital. If you somehow missed it, it is worth a read and highlights how loving she is.

How Did I Know I Had A Brain Tumor?

Most people didn’t know what was going on and the first they heard about my brain tumor was when the Go Fund Me was launched after the surgery had already been completed

I know a lot of people were shocked and surprised.

Seizures

So basically what happened is over the past few years I have had a total of 3 grand mal seizures.

Many people who have seizures don’t remember what happened. Instead they just basically blackout and are missing time and don’t know why. I vividly remember all of mine.

The first one I thought was a nightmare, the second I knew something serious had actually happened which I suspected was a seizure (and also confirmed the first had not just been a really bad dream), and the third was the confirmed seizure that sent me to the ER.

After my second seizure (almost a year after the first), I saw my doctor and went through the regular medical system to try to get a diagnosis. He said it didn’t sound like seizures and I ended up talking with a Sleep Doctor and a Neurologist who echoed his thoughts.

They ran some tests including a sleep-deprived EEG which stimulates you to try to trigger your epileptic threshold (we ALL have one) which I passed.

All of this hopping from one doctor to another took about 6 months, and in the end, I didn’t know anything more than when I started. It was a weird experience having to decide if it was worth the $400 of insurance co-pay to get an EEG done that may or may not tell me anything.

The current thought at this time was maybe they were just super severe panic attacks? (That was actually more terrifying because of the decidedly physical symptoms I was feeling!).

I was so thankful to have purchased insurance from the marketplace or I would likely have lived out a MUCH different life!

The Third And (Knock On Wood!) Final Seizure

Almost one week after my EEG I had my third seizure. This time instead of being alone I was with Lisa. As the seizure started this time I remember thinking “oh no, I’m going to scare Lisa” before the seizure took over my thinking and my world turned black as my senses shut off.

I seized up and was bleeding out my mouth. She would later learn I’d bit my tongue.

I was barely breathing, occasionally taking random gasps of bloody inhales. My face was turning ashen. I was unresponsive.

She reacted swiftly and an ambulance was there in about 11 minutes! The wonderful team that showed up got me stabilized quickly, put me on oxygen, and started some tests to help figure out what happened before loading me to go to the hospital.

I was in almost a dreamlike state during this. I was most of the way unconscious until much later.

Small snippets of memories floated to the surface in the coming weeks.

I remember wanting to tell her it would be OK and that I was fine but being unable to speak so I clumsily took her hand in mine and kissed it.

The ambulance crew and Lisa trying to tell me “sit Lucas sit” (like you’d tell a dog) to get into the chair to go down the stairs since the gurney wouldn’t fit. Apparently, if they repeated commands eventually some piece of message would get through and I finally sat.

The E.R.

I became fully conscious in the ambulance as the doors closed to take me to the hospital

They were doing the neurological exam asking me questions like “Do you know where you are?” and I didn’t know.

This scared me because I was alert enough to know that I SHOULD know but for some reason, that information just wasn’t available to me. My brain just couldn’t pull up information like my own name.

Eventually, a few minutes later I was able to remember back to a few minutes before being put in the ambulance when Lisa had said “They are going to put you in the ambulance and take you to the hospital. I will be there right behind you.”

From there, my general acuity came back fairly steadily, being mostly myself again by the time I got into a room in the hospital.

I was definitely exhausted. I remember that for some reason I was WAY too big for the bed they had me in which they claimed was just a regular adult bed. Lisa said I looked like “Ned in the Bed.”

They ran lots of tests at the hospital and eventually did a brain scan.

The MRI revealed that I had a 3mm tumor in my brain and that I needed to speak with a local brain surgeon on Monday after the weekend.

I was shocked and never would have suspected I had brain cancer and a tumor growing inside my skull.

It seems that the tumor was what was the root cause of my seizures. It had been growing over time and had hit a critical mass that caused periodic seizures that seemed to be increasing in their severity and were becoming more frequent.

I was equal parts terrified and relieved. I felt confident I had been close to dying with that seizure and since they seemed to be getting worse I wasn’t sure if I’d live through many more. At least there was a path forward now… albeit a scary one.

Finding A Solution

The Local Brain Surgeon

The ER referred me to talk to a local brain surgeon after the weekend. I assumed that he would schedule me for surgery fairly soon and we would progress with care locally. (Thank goodness we ended up not going this route!!)

When we met with him, I asked him “So, will I be awake or asleep during this procedure?” since Lisa and I had done some preliminary research showing that surgery while awake generally has better outcomes.

His response was “I don’t know if we have the equipment here to do an awake surgery.”

This was a HUGE red flag to us that either

1. He hasn’t done many of those procedures
2. The provider’s equipment was outdated.

Even with this red flag, we still scheduled a biopsy a few weeks out where he was going to put me to sleep, drill through my skull to remove a piece of the tumor, and send it off to labs at the Mayo Clinic for a month then get the test results back. The next step would probably be surgery to remove the tumor.

Neither Lisa nor I left the office saying “we are NOT doing that.” The doctor seemed nice enough and smart enough to trust. We were so relieved to have someone else who was going to maybe help us out that we weren’t looking at things critically.

It took a few hours before we started talking about how this path just didn’t feel right. After some discussion, we decided we should look at getting some other opinions.

The doctor not knowing the answers to some really basic important questions was actually a huge red flag that couldn’t be ignored!

Choose Your Own Adventure

This was a big turning point.

In some parallel universe, we would have stayed in Springfield and had the biopsy and then later the surgery and I am convinced things would have gone much worse.

My brain is INCREDIBLY important to me. I have always enjoyed intellectual activities and solving puzzles and I’ve built an entire business around this exact passion. I educate business owners who consult with me to grow their organizations. What would a life with limited brain function look like?!?!

As I look back on all of this now there are so many things we are thankful for. So many things went really well and could have gone poorly.

Having Lisa in my corner during all of this was such a huge blessing and we collaborated to find the best solutions which in this case meant getting a second opinion.

Second Opinion

We started trying to figure out if getting the procedure done at a hospital renowned for its expertise in Glioblastoma Brain Tumor removal was even an option.

We determined we would just do research and reach out to them and go down that pathway as far as we could until we hit a roadblock we couldn’t make it around.

In our search, we came across 3 hospitals listed as the best for what I was going through.

• Duke
• John Hopkins
• MD Anderson

We also had Barnes in Saint Louis as a more local expert alternative if the very best in the U.S. didn’t work out. When calling them we found out that they wouldn’t take my case because of the kind of insurance I had. SLU seemed like they could work out if we needed them to.

It is interesting because going into this outreach and search process we knew that it was a low probability that one of these renowned hospitals would work out, but that at least by going down that path, we would have peace that we did everything we could to get the best care possible.

Were we just setting ourselves up for heartbreak? Getting hopeful about a procedure that would never happen?

After reaching out to her network, it turned out Lisa had a connection who helped us get a hold of the right people at Duke! We began our journey down the Duke path.

How far would we make it?!?!

The Right People At Duke

Everyone we talked to at Duke was amazing!

Every. Single. Person.

They took the time to make sure we were helped and felt comfortable and had the information we needed.

After talking with the appropriate intake people to get us set up in the Duke system with an account, we spoke on the phone with Denise, the Nurse Practitioner, who would later be the person sitting across from me as I had brain surgery talking me through the process.

She took time on the phone to walk us through everything and set clear expectations.

She requested we mail her the footage from my brain scan ASAP directly to her. She also gave us her personal contact information and instructed us “You have my number. Call or text if you need something, don’t just look at it on your phone.” And she truly meant it.

They got the records and she passed them on to the neurosurgeon.

Talking To A Brain Surgeon

A few days later Dr. Kamisarrow, the neurosurgeon himself called me at what had to be the end of a long day (8 pm his time!) and spent a whole hour on the phone explaining things to me.

For me, one of the things that separate a great doctor from an OK doctor is that with a great doctor they are almost bored with what is happening because they have seen it before. They do however still get excited about helping the individual case in front of them. It is sort of like the old adage “when you score a point or win a game to ‘act like you’ve been there before.’”

Near the end of the call, he even offered to send his surgery recommendation to any other provider I may want to have the procedure done at for free. He just wanted to help me get rid of my brain tumor problem by the best means available to me.

No questions we asked surprised him.

Questions that had come back with curious answers from the local neurosurgeon (“Can I get the COVID vaccine before surgery?”, “Will I be awake or asleep during surgery?”….etc.) came back with clear guidance and the underlying logic explained. (“No, you can’t get the COVID vaccine. When you were in the ER they gave you steroids, you should wait a few weeks after being off of steroids to get the vaccine so it will work properly…” etc.)

He even knew the questions we didn’t know to ask!

The most interesting thing he told us was that if I had a seizure during brain surgery (which was a real possibility!) they just have to spray cold water directly on my brain and it will stop it. This was a cool factoid to me. Since my brain is normally closed in by my skull that isn’t a good solution normally, but while he has access to my brain, how cool that cold water will instantly calm it down?

This odd fact was somehow especially comforting for me. The last seizure had almost ended me and I was afraid of having another… and how much worse would it be to have one while awake during brain surgery? The knowledge that they could instantly stop a seizure there was a big relief.

The Plan

Dr. Kamisarow was able to explain to us how a procedure would go.

I would be awake so that they could minimize how much function loss I had from surgery. If I was a less healthy individual this would NOT have been an option. It takes someone who can deal with some stress and discomfort and limited anesthesia to be a candidate for this. Thank goodness I was young and in good health.

Since the tumor was on my top right side near where motor skills are controlled the main concern was weakness or loss of movement functions on the left side of my body as they removed the tumor.

By having me awake, they could have me move my hands, feet, or whatever. Then they could zap a part of my brain short-circuiting it to simulate having it removed. Then they could test if I could still move my hand. If I couldn’t they knew “better not cut here if we can help it.” If I could move my hand, then they knew it was safe to remove.

Every brain is slightly different like a fingerprint. There is no “official map” for the brain. Precision is impossible. It is a little bit like a game of battleship where you go in blind and feel your way around it.

After surgery, there is usually swelling and sometimes the swelling will make it seem like there is an inability to move, but when the swelling goes down the problem goes away. By having me awake they can tell me honestly that in a day or two my movement would come back or not.

A tumor-like mine is sort of granular around the edges. Like grains of sand, they can take the core bulk out, but it is impossible to get “all of it.” So, if they were too conservative they would unnecessarily leave too much tumor behind. If they were too aggressive they would get more of the tumor but could also take out parts of my brain that I am using!

With a condition like mine, the procedure is one of the most essential parts of treatment. We would later find out that tumors like mine don’t have much response to chemotherapy typically, so getting as much out as possible was hugely important!

While some of this was scary, it was much less scary for me to hear it explained directly in real terms outlining the risks. We felt confident that he wasn’t sugar-coating the experience but that he WAS optimistic for a good outcome for my case. He wanted me to recover well.

When I told him that I had a biopsy still scheduled locally for the following week, he told me that isn’t what Duke would do.

Doing a biopsy carries the same risks as a full brain surgery (infection, blood loss, loss of function, recovery time..) so why do 2 surgeries when we can do one?

If there was a question about removing or not removing the tumor, then maybe a biopsy makes sense to learn more about the exact type of cancer found and inform a decision.

He said at Duke they would do the surgery, remove the tumor and THEN send off the removed tumor for biopsy results.

They could do one surgery and then do the pathology with the tumor removed from my head when I am recovering, as opposed to having two recovery periods.

Since in my case I was 100% ready to have the tumor removed, it didn’t really make sense to wait to see “what kind” it was first.

Removing the tumor ASAP and figuring out the pathology later was a better fit for my case.

We canceled my local biopsy and knew that we really wanted the team at Duke to be the ones to manage my surgery. They were unequivocal experts.

How to make Duke work out?

As of right now there still wasn’t a clear path to HOW a surgery at Duke would work.

All we knew was that we WANTED it to work. We would figure out whatever it took because the difference between the local option and Duke was evident.

I was prepared to sell every single thing I owned to try to make this happen.

Would my insurance work?

How much would it cost out of pocket? Would they do the surgery and I could just pay them back for the rest of my life or would I have to find a way to raise the money before they would operate??

How would we get there? Where would we stay?

Duke scheduled the surgery for March 11th (less than a month after my seizure and ER trip!!! Things were moving fast!)

We assumed they wouldn’t have scheduled it unless my insurance was expected to work but I was still doubtful. I wanted them to be the ones to do my surgery so badly but couldn’t allow myself to celebrate only to have my dreams crushed.

I even called to confirm that insurance would work before leaving town to head there. They gave me the green light.

I re-homed my dogs, let my clients know I would unavailable for a month, and started to get ready and pack.

We scheduled a trip out to Duke for surgery and started setting up hotel stays.

Lisa ended up doing all the driving since my seizure means I’m not allowed to drive until I am seizure-free for 6 months.

Onward To A Surgery At Duke

“Fun was had?” “Yes, fun was had…”

We decided it was best to take a leisurely trip out there to arrive well-rested and in good spirits as opposed to rushing and stressed. This was a spectacular choice.

Flying wasn’t an option because of fears of COVID.

Now that I knew I had a brain tumor I went from thinking I was a young healthy individual who would probably be fine if I got coronavirus, to someone who had brain cancer. The added comorbidity made me such a much higher risk and even if I was lucky enough to only have a minor virus interaction that would still push my surgery and other care back who knows how long. That could be fatal in its own way.

By now Lisa had received both of her vaccine doses since she is a health coach so she was able to also act as a shield for me. She went into stores or touched doors so that I could limit my contact with people.

Driving allowed us the freedom to adapt our plans depending on how the outcome went. If I couldn’t walk after surgery and needed to do physical therapy for weeks, a car could help make that happen.

We had a marvelously enjoyable trip together. At times it was almost possible to forget we were headed into an unknown future of brain surgery. At other times, the fact that it could all end made every moment that much more sweet and full of gratitude.

I haven’t taken a true vacation in I don’t know how long, and the 4 or 5 travel days it took to get to North Carolina with the woman I love were marvelous and felt like a much-needed getaway.

We ate unique food and had unique coffee and explored unique places like Asheville, North Carolina on our trip out.

We hiked and had unique experiences in nature.

Fun was had.

But eventually, it was time to get to Durham, North Carolina, and the doctors at Duke.

We arrived in Durham with some time to spare and explored Duke where Lisa had gone to become a Nationally Board Certified Health and Wellness Coach. (This is where her account of our experience picked up.)

Waiting

I would be staying the night in the hospital and then have my surgery in the morning.

What do you do 2 hours before checking into the hospital for brain surgery?

Even if you think that you are with the right person you’ve made the right choices and you are in the right place and the right state of mind…you still get anxious.

Lisa and I went to Noodle and Company and I had a salad. I wasn’t really hungry but I knew I would want something in my belly and it seemed easy to eat. It was good.

Everywhere I went I was worried about COVID. What if I got it a day before brain surgery and the symptoms didn’t start until a few days after when I was in a weakened state? Would it kill me?

We sat together at a table outside.

The sun felt good on my face and I enjoyed my time with Lisa although I was probably a bit distant.

I reflected back that I was fairly happy with my life overall. I’ve made some mistakes, but I’ve also done some good. I found someone I love. I positively impacted some lives. If I were to die, I would have made the world a little better place in my short time and that was good. I’d much rather stick around longer and make a bigger impact, and have more time on this earth with the people I love…but my life hasn’t been wasted…there is some peace in that.

Getting Admitted

So now it was time to go back to the hospital and get admitted. Unfortunately, the admission area was full. People around us were coughing. I was super worried about COVID contact and couldn’t stand far enough from people. Eventually, they called us and got me checked in at a desk with some cool hand-drawn ninja turtles.

They took us up to my room and had me take a shower to sanitize. It was the pediatric room, so the shower was itty bitty.

Now was the awkward waiting time with Lisa. We both knew that eventually visiting hours would be over and she would have to go back to the hotel room and I would have to stay in the hospital. We both knew that the next time we saw each other would be after my surgery the next day and things would be different. Lots could change.

I think this part of things was probably much harder on her than on me.

Somehow it is much easier to go through something hard than to watch someone you love go through it and feel helpless.

At least I had a place to focus my anxiety as I directed it towards accomplishing the clear goal of having a good surgery result. For her, she just had to wait and watch the seconds… tick… by …on… the… clock.

The Night Before

Time went way too fast and it was hard to know what to say.

It got dark outside. The hospital brought up some mostly edible dinner, besides some of the worst broccoli I’ve ever had. (I spit it out!!).

Visiting time was almost over. Only a little time left with Lisa.

We didn’t let the somber mood take over though. We danced together – just having fun. She had been teaching me a little West Coast Swing which ended up blending with random dancing to our own tune of love. It was really special and we just savored the time.

Sadly she had to leave though. It was that time.

On the trip, I had brought a small stuffed animal with me. It was a pound puppy I had gotten as a kid when my parents had left me to stay with my grandparents. To me, it symbolized love even if there was distance. I had brought it with me on this trip in case I was needing some extra comfort. I had taken to holding it at night when I was sleeping at home by myself and afraid of seizures to give me some piece of love to focus on so the fear could abate.

I had deliberately not brought it to the hospital with me and left it in the hotel for Lisa to hold as a connection between the two of us since I knew it would be a hard night for her. It would be hard for me too, but there was nothing that could be done about that. Being hard for her could maybe be lessened through acts like this.

After she left I tried to keep a positive attitude and struggled to not let nerves overtake me so I would be able to rest.

I read some of my favorite book Catch-22 which we had found in a used book store on our trip. This book is one of the few ones that get me to laugh out loud repeatedly even when I’ve already read it. It helped lighten my mood in preparation for trying to sleep.

I had a night of fitful sleep where I tried to keep calming myself knowing that the stronger and healthier I went into surgery, the better the result. I would toss and turn and sleep for a bit and wake up and toss and turn and think and sleep for a bit…

Visualization

It was really odd for me.

My imagination would start to wander and I would let it prod down some negative paths like “what if I can’t move” and start to imagine some worst-case scenario what-ifs.

But those negative paths seemed somehow alien to me. They were fuzzy outcomes. They seemed somehow highly unlikely.

Normally I am pretty good at worrying and imagining negative scenarios.

I would imagine a positive path instead. When I thought about a future where the surgery goes well and the outcome is great, and that I could move and walk and everything… that future vision seemed clear and likely.

Since I couldn’t clearly see negative outcomes, and I COULD see a variety of positive outcomes, and since focusing on positive outcomes was the thing I could do to most increase the chance of a positive outcome, I chose that path.

I forcibly stopped focusing on negative outcomes and stayed focused on the positive ones that felt right. This was like a river flowing where the water is taking it and wasn’t hard, it was actually harder to try to think negative thoughts.

I think choosing to have an expert team like the one at Duke made this much easier. There wasn’t any anxiety over “am I at the right place with the right team?”.

We had done everything we could do to prepare for the surgery from having loving relationships to eating healthy to exercising to finding time for mental peace and enjoyment leading up to it. There were no regrets so I was able to go into surgery with much less baggage.

So I was fairly healthy going in but also I had another experience to pull on which helped and that was training Brazilian Jiu-Jitsu. I had competed in numerous tournaments specifically to deal with anxiety and fear and avoidance of conflict. This decision ended up being very helpful in dealing with these exciting emotions head-on the night before surgery and going forward.

I could manage the fears and feelings and just show up to do the best I could. I knew that whatever tools I had in my toolbox are all I have at my disposal and if they aren’t enough there is nothing I can do about it now. The time to do things was before, in preparation. Now, there is only the doing.

The waiting continued the next morning and my surgery ended up starting a few hours later than planned. I tried to sleep and rest as much as I could since I didn’t know how well I’d be able to rest afterward and I wanted to go in as sharp as possible.

What’s It Like Being Awake During A Brain Surgery?

For me, being awake during my surgery was a huge benefit. I am a bit of a control freak and this way I felt like I had some control over my destiny.

If you asked me to choose between going to sleep and having surgery then waking up to find out how it went or being an active participant I would pick being an active participant every time.

But I’d just as soon never have to be awake during another brain surgery ever again.

The team did a great job explaining and preparing me for what I would experience. That they would put me under until they cut through the layers with pain receptors then wake me up when it came time to start cutting on my brain itself. They said that when I woke up that it would take me some time to reorient.

Before they had put me under the initial anesthesia I had asked them to make sure I was secured because through my Jiu-Jitsu training I was pretty good at getting out from under things trying to pin me and that could happen involuntarily.

But words can’t really capture the experience of falling asleep gently to anesthesia. Then having the sweetest dreams ever (juxtaposed against the stressful fitful attempts at sleep the night before). To suddenly waking up strapped down so I couldn’t move. To noticing a tarp over me muffling the beeps of electrical hospital equipment. My thoughts coming online to realize that I AM IN BRAIN SURGERY. Feeling the warmth on my head at the surgical site where they have just finished cutting through my skull and pulling apart the layers.

The anesthesiologist I had talked to was looking at me as I woke up into my brain surgery. As soon as I knew what was happening I told her “I’m reorienting,” which everyone seemed to find funny and her head disappeared as she went about her other duties. I let the gravity of everything hit me and tried to slow my breathing.

Everyone was really amazing and I was happy to be part of such an expert team. There were probably just under a dozen people in the room. I could mostly only see the Nurse Practitioner Denise who was sitting across from me.

I couldn’t drink water even though my throat was dry but I could eat some ice chips she was allowed to give me little by little. Those ice chips and Denise’s warm smile were nice little reminders that this wasn’t some cruel torture and that everyone wanted a good outcome for me but that it was just how it had to be.

One of the first things I asked Denise for was “Hey, I use my brain a lot and this may be the only time it is opened up. Can you take a picture of it for me? And she DID!!”

I could hear the great anesthesiologists talking to each other. They had done great work of putting me to sleep enough to do the incisions and then waking me up to the right level of awareness.

I could hear Dr. Kammisarow, the surgeon directing the room like an orchestra conductor.

I was cracking jokes and staying involved in the process while also being mindful not to derail and distract people from the important work they were doing. At one time they had to change the angle of the table and it put me in a bit of a bind.

One moment stood out to me. Dr. Friedman was overseeing the entire procedure and there were other surgeons in training there as well.

At one point in time, he had Denise run me through a complex series of hand movements repeatedly. Then he had them do a “level 2” stimulation to a part of my brain. My hand stopped working. I was trying to tell it to move but it just rested there looking at me. I heard him say “Well we told him this could happen.”

Did that mean I was going to lose the function of my hand for sure? What else would happen?

I clung to some advice the anesthesiologist had given me before the procedure which was “They are going to prod around and stimulate different parts of the brain. Some people read too much into that. If they stimulate you and something happens or nothing happens, it doesn’t mean anything. It is like a game of battleship and they have to close in on what they are looking for.”

Quickly once they stopped stimulating that part of my brain my hand could move again.

Being operated on was tiring. I had to stay on that same side, of course, and couldn’t roll over or change my position for what I was told would be a few hours. Once you are in brain surgery you just keep doing your best to try to get out the other side. There is no stopping or slowing down. Would I have enough energy to sustain myself?

The other big thing that was interesting to me was that brain surgery was HOT. I was sweating under the tarp. Eating ice cubes helped and they would occasionally spray something cold on my brain area which I would request frequently and even fanned my legs under the tarp.

Besides that, brain surgery wasn’t especially painful. I mean it wasn’t a walk in the park, but it was tolerable and not miserable as I feared. I would tell the anesthesia team that I was feeling pain and they pretty much said there was nothing they could do about it. They couldn’t dose me or it would put me under so I had to just deal with it. The cold on the brain seemed to help reduce the heat which seemed to reduce the pain.

Every so often I would run my hand back through that series where I’d lost function earlier to see if it was still working. It was. Had that hit the SMA center they had talked about?

The left side of my body seemed to continue working and I could feel the expertise around me.

This whole ordeal was a learning opportunity for a handful of doctors in training who were in the room also and who would go out in the world and help other people. As they were stitching me up I heard one voice explaining to another voice how to get the stitches tighter.

Just another reason I was grateful to have gone to Duke for the procedure.

Recovery After Surgery

I was relieved that right after surgery I was still able to move the left side of my body. I kept running my left hand through that sequence that had stopped working during surgery. It kept working. Maybe it was only the stimulation that had shorted it and it would continue working. Maybe not.

The nurses came by and had me do my neurological tests.

Where are you? Push on your hand with both feet. Raise both of your arms and hold them up (for this one I would make angelic heavenly “awww” sounds when I raised my hands for my own amusement. I laughed every time. I don’t think anyone else found it funny. Maybe my motor strip was fine, but my comic strip had been affected?!?!)

I passed all of the tests with flying colors

The swelling after brain surgery increases the risk of seizures and function loss. The longer after surgery I could go without these problems the less likely that I would have them.

I was worried but felt so happy.

Lisa had been contacted when the surgery was over and had gone straight to the hospital.

When she got to the room I was so happy I could hardly speak, but I waved my left hand at her and said: “There’s My Lisa”. She came over and hugged me and said “you’re ok?” and we both just sort of cried tears of gratitude.

I can walk?

The day seemed to be whizzing by and I knew that visiting hours would be over soon and Lisa would have to go home.

A doctor came in to check on me and see how I was doing and did the regular neurological tests and casually asked me, “Have you walked yet?”

I looked at her dumbfounded. “I’m allowed to try to walk!?!?!”

I just assumed that I was to stay in the bed since I had brain surgery earlier in the day. I eagerly declared “I want to try to walk.”

It was time for Lisa to leave and I said “I want to help walk Lisa out.”

I didn’t know if I could walk or not to be honest, but I felt fairly confident I should be able to. I was passing the neurological testing and able to move my body.

I successfully walked Lisa out to the end of the hall to get on the elevator slowly but surely.

By the time I got back into my bed I was exhausted, but also happy. Lisa and I had spent some time together and I could walk!!

I didn’t have too much pain even after surgery. I had headaches for a few days that Tylenol seemed to take care of and my incision area swelling would hurt and pain medicine took care of that. (I only ended up needing to take one or two pain pills after the time I was released from the hospital and was able to start tapering down my Tylenol doses a few days later.)

Sleep

Sleeping was still hard because I was a bit traumatized
1.) The last time I fell asleep was due to anesthesia and I woke up in brain surgery. That is shocking even if they tell you about it.
2.) Before that, I had only had seizures when sleeping (never waking) and I had been generally scared of sleeping due to that anyways, but the chance of seizures was currently elevated.
3.) What if I fell asleep and when I woke up I couldn’t move or walk? I could currently and wanted to hold onto that.

All of that was mostly out of my control.

I tried to use the logic part of my brain to tell myself that waking up to brain surgery was a one-time thing but I had sort of lost some trust in my self-talk Fool me once… It would take successfully falling asleep and not waking up to brain surgery a decent number of times for a few weeks before this would go away.

I told the nurse on duty that I was really worried about having a seizure and asked her to please just check in on me every so often and that knowing that would allow me to sleep easier. She did.

If I was going to lose the ability to move I might as well have it happen in the hospital where they could help and get some rest.

I slept in small spurts and would wake up and move my hand to test it and smile because it still worked and then have to calm myself down again and fall asleep for another hour or two and repeated this sequence the whole night.

The problems sleeping would continue for weeks after my surgery slowly improving.

Released To Lisa

The day after my brain surgery (probably about 24 hours exactly after my surgery time) I was released from the hospital into Lisa’s care.

I’m sure from her perspective it was sort of like when a mother gives birth and then leaves the hospital with the baby.

It’s like…. is there some sort of instruction manual or something? Just be careful and figure it out?!? That sounds stressful.

And for my part, I definitely wasn’t my full self.

I was mentally distant. Focusing my thoughts was just too exhausting so I just watched them flow by like water in a river. The same with conversation.

Physically I was able to walk to the elevator and into our hotel room. That was pretty much my limit.

We stayed in Durham at a hotel for a few days to make sure everything was fine before heading home.

Everything was fine and I continued to feel better and better and Lisa and I celebrated by baking some Chocolate Croissants together in our hotel room!! That is a story all on its own, but it was a magical return to life…not just as a patient, but as a person.

Healing Accelerates

A big turning point for me was when I was having trouble sleeping one night because of the traumatic events I mentioned earlier and Lisa had me do a body scan meditation. (Basically, you breathe air in while focusing on an individual body part and as you breathe out. Your goal is to breathe out the tension of that body part. So one by one you breathe in and out and relax each part of your body.).

I had done this before over the years and always enjoyed it. Sometimes I would have a spot that was holding extra tension and maybe have to breathe into it a few times to get it to calm down.

This particular time, my first after surgery, I had to breathe into EVERY SINGLE PART OF MY BODY multiple times. The tension just would not release. I’d breathe into my foot and my ear would itch. I’d breathe into my calf and my bicep on the other side would twitch. And in hindsight, of course, it did….every synapse and muscle in my body had been through quite the ordeal.

It probably took an hour for me to work through my whole body whereas it is usually a 10-minute ordeal. I felt like I was untangling a mess of Christmas lights. The cords were all wrong.

When I was done, I felt so much better and so much more at peace.

I would repeat this body scan on my own a few times over the next few days and each time it was better and better. Maybe the next time only 30% of my body had issues. Then 15%…then 10%…then down to more normal ranges.

For me, this is when it felt like healing really started to accelerate.

I continued to get better EVERY SINGLE DAY.

I had been scalped…

So, before this, I had never been scalped. Here are a few things that you don’t think about until after brain surgery.

There are lots of layers in your head. There are layers of fluids and bone and fat and skin.

After brain surgery when you are stitched back together, the fluids move around until everything heals and finds its home again. Until this settles down, you have noises in your head. The noises are like what you can hear sometimes if you have a sinus infection and a bubble is moving through your sinuses, but all around your whole skull.

It seemed like my entire head was a lava lamp. I would hear random “blub….blub….blub”.

Other times they were smaller faster bubbles. “blublublublub” These almost sounded like a pig snorting at the base of my head.

Occasionally it would be slow creaking noises like two tree limbs rubbing together in the breeze.

They weren’t audio hallucinations, they were real sounds that continued to happen less and less frequently for almost a month before they finally stopped.

The other surprising thing was how “flumpy” the top of my head was.

It was really indescribably weird. Especially weird because your hand expects to feel something semi-solid. Imagine you are getting ready to touch a table and when your hand finally makes contact you feel scrambled eggs instead of the cool wood. There is almost a visceral “that’s not how it is supposed to be” response.

After the shower I told Lisa “my head feels weird.” and she said, “I KNOW!!!” She hadn’t wanted to tell me because she didn’t want me to worry but it had almost made her pass out the first time she touched it! Even though it wasn’t the case it felt like touching my scalp was pushing through that softness all the way down into my brain. And she had been doctoring my incision daily for a week! She is so tough!

We labeled this indescribable feeling of displaced scalp fat pads as “flumpy” and the flumpiness returned to a more regular feeling head in a few months as it slowly solidified.

Returning Home

Once we had stayed the few days and things seemed fine, it was time to pack up the hotel room we had affectionately called home for about a week and drive back to Springfield.

I was still so weak that we were concerned about my ability to ride in a car on the long trip home. It ended up being OK but it was at the limits.

I was also on strict orders to not lift anything over about 8 pounds. This was advice I had to follow. If I lifted something near that weight and held it for any length of time I would start to feel the pressure build-up in my head, like when your ears need to pop but won’t, and it would keep building until I felt like I may pass out….so needless to say I didn’t push that limit at all.

So, one of the hardest things for me to do was stand there and hold Lisa’s purse while she wrangled all of our luggage from the hotel room and into the car. Normally that type of lifting is work that I revel in, but I was useless to save her from that manual labor now.

I also couldn’t help her drive and I wasn’t even very good at thinking of things like where to eat.

I was still recovering and she was incredibly patient and took all of this extra burden in stride.

Recovery

During this time everything I did just made me physically tired. The brain consumes a LOT of the energy in the human body and mine was sending all of its resources to healing that. Not to mention that I had lots of medications put into my body and they say most people feel the effects of surgery anesthesia for about a month.

Each day seemed to be a bit better. Sometimes I would accidentally do a little too much but I was sort of prodding my boundaries to check them since it seemed they kept improving.

I think it makes the most sense to talk about my recovery on three fronts
1.) Incision
2.) Physical
3.) Mental

Incision

The incisions were pretty much a non-issue.

My incision recovered fairly quickly. It only really was tender for a day or two after surgery and then was mostly fine. It actually healed up surprisingly cleanly and quickly. I think this was largely due to Lisa’s meticulous doctoring of my head each night.

Shortly after returning to Springfield, I was ready to have the stitches taken out, and that all went well also.

The only annoying thing is that they had to shave part of my head to make the incisions. (At least it is an “L” for Lisa and Lucas!) So I have a big “L” of chia pet hair growing in under my regular hair but I’m fairly tall and let my normal hair lay over the top of it and most people wouldn’t notice.

If you see me in person and ask nicely I’ll probably show you. 🙂

Physical

The physical has continued to get better little by little each day. The best analogy I have is to act like I was really horribly out of shape.

I had to build back up to where I could walk down a hallway (like after surgery to see Lisa out).

Then maybe I could walk a few laps around the halls the next morning.

Then maybe I could walk into the hotel, take the elevator and go to the room.

Then a few days later I could walk from the room to the car, ride to get food, and walk back to the room a few times a day.

By the time we got back to Springfield, I could probably walk about half a mile.

A few weeks later I was up to a mile.

There has been a steady balance of patiently doing physical work and recovery. Fairly soon after surgery, I walked 2-3 miles to go vote. It was election day and I couldn’t drive. Although I had plenty of offers of rides from people I wanted to see how much I could do myself. I made it, but I was exhausted when I got back. It was further than I should have gone.

As of writing this, I can walk a few miles and hardly notice just like before surgery.

The limit on lifting weight has been removed (within reason….no crazy workouts or anything yet) and Lisa and I have done some gardening together where I did a little manual labor. I was tired by the end and slept well but made it through without feeling like I hit the boundaries too hard.

So basically physically I can do almost anything I would need to on a daily basis. Maybe I feel a bit punier like when you’ve been sick for a while and don’t quite have the same oomph, but otherwise, I’m mostly back to normal.

I haven’t tried to do anything intense to really check my boundaries, but I expect if I try to lift anything especially heavy or train BJJ I suspect that’s where I’ll really notice the difference.

Mentally

The mental weakness has been the slowest thing to recover.

Just after surgery it just took too much energy to focus very much on things going on around me. A brain consumes an enormous amount of energy and thinking magnifies that.

For me, my physical returned more and more before I started to notice much difference in my mental stamina.

I think this was a combination of the anesthesia workings it’s way out of my body, the surgery site healing, and my body feeling more confident as my physical stamina recovered that it could spend some energy thinking and not leave me drained.

A few weeks after my surgery I could only handle about a 15-20 minute conversation without being wiped out. Around this time I pushed myself too far and had an hour-long conversation with someone that left me drained with headaches and forced me to sleep for multiple days.

This re-established my limit and that the mental stamina was going to be slow coming back. It was getting better each day though. Being patient here was mostly made possible by the Go Fund Me donations.

A month after surgery I resumed my one-hour consultations with my clients. They were all aware of what was going on and were happy that I was back so they gave me some grace during those sessions. But I would hang up the phone and go lie down in bed to sleep for a few hours until my next client. Making it through a few sessions a day was all the energy I had. I didn’t have the energy to cook my own food or do anything else.

This slowly improved to where I could do the sessions and didn’t have to nap, but slept well at night.

When we went back to Duke for the 6-week follow up I took another 2-week break from work which was largely supported by the Go Fund Me and during this time I really recovered a lot.

By the time we got back, I felt much more like me.

I can do most of what I need to on any given day, some harder mental pushes really exhaust me more, and just like with my physical abilities I’m not trying to push my outer boundaries.

Whereas maybe I was lucky before and almost never got mentally tired, I can feel myself wearing down now more often. It does seem that each day the limits are a little bit better though.

6 Week Checkup – Return To Duke

A few weeks after my surgery when the steroids were out of my system I was able to get the first shot of my COVID vaccine and that gave me some peace of mind that it would be working in my system giving me some protection. I wouldn’t be able to get the second shot until after returning from my 6 weeks Duke follow-up appointments.

We got into Durham and they performed an MRI that becomes the “baseline MRI” for after surgery.

They showed us this imagery next to the imagery from before surgery.

Before in the imaging from the Springfield ER, you could see this ball of the tumor.

Now you could see the edges of the tumor that couldn’t be removed still highlighted but the center of the mass that used to be lit up was now dark like it was supposed to be.

The ring around the edges was super thin and it all looked great. They had gotten SOOO much of the tumor. I was really happy with the results!

The surgery team was happy with my recovery and the neurology checkup went great. They ran me through all sorts of weird cognitive tests. Like “remember Lemon, West, and (some other word I don’t remember now and I’ll ask you for them later…)” and balance on one foot and other stuff.

My left side did well but was a little weaker on gripping than the right, but hardly noticeable.

Oncology

We met with Dr. Johnson from the amazing Oncology team.

She spent time with us and answered all of our questions so we could feel comfortable.

Digitally I had seen the pathology results come back, but it was fairly daunting to try to evaluate what the FISH tests meant or whether it was better to have IDH-mutation or IDH-wild. You pretty much have to have an expert walk you through this stuff.

Dr. Johnson explained that what I have is a diffuse astrocytoma with IDH-mutant and WHO grade 2. They name the types of brain tumors based on the brain material they are made up of. Mine is made up of astrocytes.

The way I understood it is that if the brain is a jello salad with fruit suspended in it, the fruit are the neurons in the brain that do the work and the astrocytes are the jello. They are important, but they aren’t neurons responsible for firing signals or anything like that. A brain has billions of these and having some removed as I did wasn’t a big deal.

My tumor is a Grade 2 which is the slowest growing tumor option for adults and the best I could hope for. (Tumors in adults are typically graded between 2 – 4 with 4 being the most aggressive and 2 the least. Typically grade 1 is only found in kids.).

They also analyzed the genetic variations and how I was IDH-mutant which isn’t the worst.

My tumor is currently fairly slow-growing and is expected to stay that way hopefully. It isn’t the riskiest version I could have, but it isn’t the mildest either. It is a middle-of-the-road tumor.

Each year the tumor material is likely to grow back at fractions of a millimeter. Eventually, it will get to a critical enough mass to start to pose more problems. That is why the surgery is such an important part of treating a tumor-like mine and I was so grateful to have had the experts I had working on me.

It is possible that it could also evolve into a more aggressive type and start growing faster so I will be doing periodic scans to check on it. For the first year I will have scans done every 3 months, then next year, every 4 months, eventually down to just twice a year.

As long as the scans come back negative and I don’t have any new symptoms arise they hope that the next need for an intervention won’t happen for a DECADE (maybe longer).

This is amazing news for me. Since I am fairly young and healthy, a decade is a LOT of time for technology and healthcare around this type of tumor to evolve.

Maybe by the time I need additional care, I can implant one of Elon Musks’ Neural Nets and become a super awesome cyborg. We will see…

My type of tumor does not typically respond to chemotherapy. Years ago someone like me would have gone directly on chemo, but since it doesn’t seem to help much it would just deteriorate the quality of life in the meantime and the treatment thinking has evolved to focus on a healthy life instead.

Because I am young and healthy I am not a candidate for any clinical trial research studies at this time.

Typically with brain tumors like other diseases, they start by studying the scariest and highest probability outcomes. They work on treating brain cancer that kills people quickly. Now that so much study has been done in those areas and lives are being saved they start to explore the lower risk cancers like mine. The research into tumors like mine has really only started to become a major focus in the past few years. Now they are working on treatments that are in trial stages that could potentially help halt tumor growth changing it from a fatal to chronic disease!

It seems likely that if I live a very healthy lifestyle it is reasonable that I would not die from my tumor but from something else.

Great News, but then…This too shall pass…

So we spent all morning at Duke meeting with Doctors who gave us great news but we were too exhausted to celebrate and decided we would the next day instead.

The only problem was that I woke up the next morning with a mysterious pain all down one side of my body.

On first waking, I just assumed I had slept kinked up and that walking around and stretching for a second would work it out.

It quickly became apparent that was not the case.

The pain kept getting worse and nothing I could do made it any better. I had just met with all of my doctors yesterday and they all said I looked good and everything was fine and that was how I felt, so what was happening?!?!

Lisa suggested we go to the ER and I agreed. (For reference I am the kind of person normally very slow to agree to something like that and much prefer to try the “see if it gets better on its own” approach.)

I hardly hesitated when I said, “OK let’s go”.

By now my pain was mounting and spiking around a 6/10 – 7/10 on the pain scale. I don’t consider myself as having a high pain tolerance but I also don’t consider myself a complainer. I was able to barely tolerate it here.

I got checked in and when they called me back for my initial vitals and I started to walk, the pain got worse and worse and the nurse helping me said “That looks like the ‘kidney stone walk'”.

I confirmed that was exactly what it felt like having already self-diagnosed in my head that was likely the problem. I had never had one before but I heard they were intensely painful and localized around the kidneys. Check and check…

Indeed that was my problem. I got some pain medicine in me that seemed to take forever to kick in as my pain started to get into the 9/10 range. (Word to the wise…If you have a kidney stone, do NOT try to push a bowel movement!!!).

They gave me some medication to relax things so I could pass the stones and some medication for pain and a strainer to pee into and told me if I didn’t finish passing them in a week or two to see a urologist. They released me.

Not much of a celebration…

Eventually, a few days later while traveling, I was able to pass the stones much to my relief.

By the way, while traveling, a pee strainer is an impossibly annoying thing to try to use.

Mostly recovered

Now I feel about 80% myself and on an average day can forget that I had surgery. I feel that I’m slightly more physically recovered than mental, but each day I feel 1% better.

I am finally able to get the bare minimums in my day done again confidently.

I will have some ongoing follow-ups scheduled but it is expected those will continue to go well and that the next major intervention won’t happen until sometime 10 or more years from now.

I am excited to fly out with my Dad for my next follow-up. They will compare a new scan of my brain with the baseline scan from the 6-week follow-up to determine how fast it is growing in a 3 month period. Then we are going to be beach bums for a few days together for a much overdue father/son outing.

A few weeks later, I’m going to spend a long weekend with my Mom to reconnect and spend some quality time together also!

I just got back from a mini trip out west spending some time in a gorgeous part of nature and I’m feeling refreshed.

I am so happy to have a second chance at life and plan on enjoying every minute of it. As my Dad would say “I needed brain surgery about like I needed a hole in the head…”

So much has happened in the past few months and in many ways, it has changed me, but in many ways, I’m still the same person.

I’m finally ready to come back out of my bubble.

Thanks again.

You all are awesome! I appreciate you so much, and I’m thankful to have more time on this earth.

I can’t wait to catch up! Act like I’m as good as new when you talk to me!

See you around!