Things I learned more about last week

 

  • Auras
  • Deja Vu
  • Hallucination Smells
  • Unprovoked Fear

All of which I’ve had before, but was unable to really understand at the time. These are all symptoms of Temporal Lobe Seizures… which I was having several of last week before truly realizing it.

My disease, primary angiitis of the central nervous system, damaged my temporal lobe which will make these seizures more likely to happen. We (Nicki and I) knew that but it’s stressful to not know if my temporal lobe seizures are being caused by previous damage, or a PACNS flare up.

After an MRI we were able to see that there’s no new damage to my brain and there is no inflammation in my brain — that ruled out a flare up of PACNS and that’s great news!

That’s when I learned more about breakthrough seizures, seizures that happen even though you’re on anticonvulsants (medicines that help prevent seizures). So “we” (not really me at all) adjusted the medicine I’m on and I’m doing much better.

It’s really comforting to know that this wasn’t a PACNS flare up. And, in a strange way, nice to have experienced the breakthrough seizures. Now I understand the symptoms more and have a better understanding of what is going on and what to do when these symptoms occur.

Education is great, sadly learning isn’t always enjoyable.

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2017 in Under 1 Minute!

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A note from Nicki, “We are on chapter 2 of Brad and my journey…”

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Why I Film Myself Working

If you follow me on Facebook (or Snapchat: wester_brad) you may know that I’ve started to film myself working, but you probably don’t really know why.

I am a marketer and it is great for marketing and branding.

Vlogging is great for marketing. It’s easier to document what you’re doing and show people than it is to write full articles explaining what you’re doing, why you are doing it and how they can do the same. Writing that all out takes a lot of time, so if you’re looking to save time – film yourself. Video content is also very powerful on your website and throughout all social networks, but it is especially powerful right now on Facebook.

I wanted to learn how to take and edit video.

I’ve been working with cameras and editing photos and video since high school. I really enjoy it, but I am not that great at it. I used to think because I could do it, I knew what I was doing – at least the basics. …then I met professionals – people who film and edit video for ESPN, marketing agencies, freelancers, etc. I quickly realized I knew NOTHING when compared to them. I learn by doing, so I decided I need to film and edit a lot more video, and I’m always watching and learning from others.

But the real reason I film myself each week is so I can watch myself work.

Sounds weird, right? …well I have a good reason. And no, I’m not trying to be the next Gary Vaynerchuk (Follow him though!)

While filming myself each week does give me an opportunity to improve my filming and editing skills and the videos do help me with marketing – these aren’t the reasons I do it.

I simply get to see myself working – and that’s awesome.

6 months ago (almost to the day) I was walking into the hospital for my second brain biopsy. 6 months ago I was unable to read. 6 months ago I was frequently struggling to carry on normal conversations and was often using the wrong words and didn’t even realize it.

Today, I’m able to read. I’m able to carry on conversations much better than I have been able to in 9+ months. I’m driving myself again. I’m back at work. I’m so much better than I was a few months ago and every video is a reminder of that.

I’m not back to “normal” – to where I was before my neuro issues began. And I won’t ever be exactly back to that same spot. Portions of my brain have been damaged and have “died”. That means it is expected that I won’t ever have 100% of my abilities back – but that won’t stop me from living the life I want to. I just need to make some adjustments.

My most common struggle is simply using the correct words when speaking. I’m getting better with it. I’m paying closer attention to when it happens and trying to identify if there are triggers that commonly cause the issue. I’m also testing myself and seeing what I can do to help myself improve and be able to recover from situations when I begin to struggle with using the correct words.

Filming myself working gives me the opportunity to watch and learn while I go through this process of retraining my brain.

Back in February, I shared an Instagram post mentioning that I was looking forward to speaking at digital marketing events again. Over the past few months, I’ve been honored to have been offered the opportunity to speak at a few different events – some of which would even be paid speaking opportunities. I’ve turned all of them down. I simply don’t feel ready for that yet. I’m always nervous before speaking events, and now I’m scared.

 

I’m scared because I know some of what triggers the neurological issues I have, and let’s just say speaking at an event would hit several of them. Especially triggers that often leave me struggling to use the correct words when speaking. Having an issue speaking, while being a speaker at an event terrifies me – but that won’t stop me.

Fear can feel strong, but I believe we are all stronger.

I’m not going to let my fear stop me from doing what I want to do. I was scared to start speaking, but I gave it a shot and started despite my fear. I didn’t let fear keep me from starting, I’m not going to let it stop me either. So I’m preparing. I’m testing my abilities and getting myself ready. I don’t know when it’ll be or what I’ll be speaking about, but I will be speaking at events again – soon. I don’t plan on letting fear think it’s willing by waiting too long.

So, for now, I’m filming. I’m seeing how I do, how I am improving, identifying my struggles and working on solving them. I don’t need to be perfect, I never will be. I just want to be more prepared than I am today. It’s like athletes watching game film – it helps you learn so you can be better.

Fear won’t win. 

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Chemotherapy – Round 4 – Thinking Long Term

This week started off with my fourth round of chemo on Monday and Tuesday, and the rest of the week has been my needed recovery time.

Each chemo treatment has been very similar for me. I head down to Barnes-Jewish Hospital in the morning, get checked into a room, talk with a few doctors, and then start receiving the treatment by IV which takes between 16 to 18 hours to receive.

Those 16 to 18 hours are tough. I feel fine physically, the sick feelings come later. During those hours it’s tough mentally.

It’s a lot of time sitting and thinking. I spend a lot of time wondering if the treatment is really working. Will this get me back to normal? The answer is complicated and unknown. Yes, the treatment is working. I know this because I’m able to read again, my headaches are much less (although currently coming back, but we don’t know if it’s connected yet), and mentally I’m improving greatly each month.

My abilities are coming back, but will I be back to normal? Will I be back to the way I was before? No.

I’ll always be concerned with having CNS-vasculitis flare-ups, which can lead to starting this treatment from the beginning again. Part of my brain was damaged. Some of it is healing, but a small area is damaged enough to be “dead” — and we still don’t know how much of my brain will/will not recover.

These are just a few of thoughts that start pushing their way through my mind when I’m “trapped” getting treatment. I’m not really trapped, but it can feel like it when I am hooked up to so many wires and IV’s. Moving around is quite complicated and I have to keep my arms fairly straight and resist moving them around too much. If I move or bend my arms, my infusion pump will run into errors and start beeping. It’s loud, annoying and each time it runs into trouble it slows my treatment down. My 16-18 hours of treatment can quickly grow to 17-19 hours or even longer.

It’s a lot. It’s a long day(s). It isn’t easy.

It isn’t easy, and I can’t always do it, but my goal is to have a smile on my face the whole time. There’s no reason for me not to. I just mentioned the reasons why it’s a tough day(s), and it is – but I’m lucky to be going through it.

Not long ago, we (including many different doctors) were thinking I most likely had a cancerous brain tumor that would take my life in a few months to a few years. It’s not that! I’m going through chemotherapy treatments, but it’s not fighting to extend life. I’m getting treatment for an autoimmune disease that shouldn’t have an effect on my life expectancy.

Chemo isn’t fun, it’s tough – but staying positive is easy when I think long term instead of short term.

I’m not saying it’s easy to stay positive, it’s not. I’m saying it’s easy to be positive when thinking long term. If I allow short term thinking to control my mind, it’s easy to become frustrated and dread the treatment. It takes so long. It involves needles. It leaves me feeling sick for many days. It takes all my physical energy away for over a week and a half. It stops me from doing the things I would rather do. It stops me from working. The list can go on and on.

If I focus long term, it’s hard to be anything but happy. I’m getting a treatment that will make my life better. The treatment is only once a month. It makes me feel sick and takes my energy down for a week or more each month — that leaves me with almost 3 weeks of feeling better and able to do more of what I like to do each month. Each month, my health improves even if it doesn’t feel like. There’s an endless amount of things to feel positive about and will make me smile. But I only need one thought… I’m getting a treatment that makes life better — a life I get with my wife, with my family, with my friends. I’m more than happy to go through the uncomfortable, exhausting and at times painful feelings of the treatments for that.

That’s an easy choice to make, that’s easy to happy about.

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Day 140

I liked day number 140. Day 140 was Friday, February 17th. Fridays are always nice and the 17th was sunny and 75 degrees… can’t beat that. Day 140 was also the day Nicki and I received an official diagnosis for the health issues impacting my brain.

Have you read Nicki’s post, My husband, the zebra? If you haven’t yet, now would be a good time.

Waiting for a diagnosis is tough. It’s especially difficult if it’s a long wait; filled with doctor appointments where you get to hear things like, “We can rule out _______, but we still don’t have an answer.” I was able to hear that statement several times. I left each of those meetings with happiness, but after a few days, the stress of the unknown would continue to grow.

As much as I tried, I was never really able to push the stress of the unknown out of my mind. And I don’t just mean that the stressful thoughts were in my mind for parts of each day. The thoughts were always there. They never left. No matter what I was doing, the stress of the unknown was always there.

Within moments of waking up each day, it was on my mind. While I worked on fixing many office computers, it was in the back of my mind. When updating websites, it was in the back of my mind. When writing short amounts of code to solve website issues, it was in the back of my mind. When cleaning around the house, it usually moved directly to the top of my mind.

No matter what I did, it was always on my mind until I was able to fall asleep.

At first, I just tried to let it be there. I didn’t try to push it away, I just wanted to let the thought happen, then move on. That didn’t work. They never moved on. Then I tried to totally ignore it and push it out of my mind. That didn’t work at all – not even for a second. It somehow became even more noticeable. It was like trying to ignore a young child who refused a much-needed nap. No matter what I did, I was being followed around by these thoughts and the more I tried to ignore it, the louder it became.

The only option left was to accept it. So we became friends.

We’d hang out all day, every day. It did most of the talking. I’ll admit we were just cohabitating, we weren’t really friends. We were just stuck in the same situation. The thoughts were still annoying, but we were in it together.

One morning, we were walking home from mass and it was talking like crazy. I tried to change the subject, so I focused on what a nice day it was. It was a beautiful day with a clear blue sky and a surprisingly warm southern breeze. So I decided to ask it, how could it be so focused on the stress of the unknown on such a beautiful day.

For the first time in months… there was silence.

It was silent. It had no response. I felt like I had won, I had beaten the stress of the unknown; but the truth is, I didn’t.

I didn’t have a diagnosis. I didn’t know what was causing the issues with my brain. I didn’t know if there would be treatments available. I didn’t know how long it would take before I started to feel like myself again. I didn’t know if I would ever feel like myself again. All of the unknown was still unknown, and it was all still stressful.

But I knew the sun was shining and it was beautiful.

I always expected the fear/stress of the unknown would shrink as I learned more about what was going on. It didn’t.

I now have a diagnosis, I even have treatment planned. I “know” more — but the truth is, I still don’t know what the future holds. None of us truly do. We can plan and predict tomorrow, but we can’t know for sure what is going to happen.

For me, it’s better to focus on the few things I know.

  • I know I have an amazing wife.
  • I know I have a loving family.
  • I know I have many great friends, even if I don’t get to see them often.
  • I know I am incredibly lucky.
  • I know it’s a beautiful day (even though it’s raining).
  • I know the rough days make the good days even stronger.

We’ve all heard that we don’t really know what will happen in our lives. That’s become painfully obvious to me.

My new/current outlook on life: Always work for the future, but happiness comes from appreciating today.

So what is the diagnosis I’ve mentioned, but have yet to say…

Primary Angiitis of the Central Nervous System (PACNS).

“Primary angiitis of the CNS was first described in the mid–1950s. By 1986, only 46 cases had been reported in the English–language medical literature. Since 1975, an increasing number of cases have been described, and over 500 cases were reported through 2007. Primary angiitis of the CNS affects patients of all ages but peaks around 50 years of age and is most common in males. A retrospective analysis of 101 cases revealed that the average annual incidence of PACNS is 2.4 cases per 1 million person–years.”

More info on PACNS can be found at Cleveland Clinic’s Center for Continuing Education. Personally, I do not recommend researching / reading the information anywhere else. The article linked above was written in July of 2015 and for rare diseases, the date it was written really makes a difference.

In terms of my treatment it’s difficult to properly mention all of it, but here’s the start… I’m currently taking strong amounts of steroids each day. These will continue at the high dose for a while, and then the daily amount of steroids will be reduced in steps – this will happen over the next 6 months. Next week, I’ll be starting my first dose of chemotherapy (PACNS is not cancer, but it is treated similarly). Chemotherapy will also be used for 6 months. At that point, we will see how everything is going and evaluate other upcoming treatment plans based upon how everything is going.

Always work for the future, but happiness comes from appreciating today.

Photo: Nicki and I in Clearwater Beach, Florida. Taken with my GoPro the day after she agreed to marry me. I still can’t believe she said yes, and I’m incredibly thankful she did.

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The Last 96 Days

The last 96 days have been difficult.

(Don’t want to read this much? Just scroll down until you see “Day Number 96”.)

On October 1st, I woke up in a hospital without knowing what happened. I would learn that I had a grand mal seizure and that they had found a tumor in my brain during a CT scan. This had all happened when Nicki and I were in Columbia, Missouri for a few concerts and I was happy to be able to make it back to St. Louis the very next day.

We quickly contacted a neurosurgeon and began tests to help us learn more about the brain tumor in my head. That’s when I really started to hear the words that I was scared to hear, especially when said together – brain tumor and cancer. More specifically, the term I was hearing was glioblastoma.

Glioblastoma is a type of brain cancer that they were very concerned about. A type of cancer that would take my life in a year or slightly more if I were lucky. Soon, it was time for my first biopsy. As you may have read before, it went well. We were even able to rule out glioblastoma, but we were unable to get a diagnosis and the waiting game continued.

I haven’t written since then, mostly because it’s very difficult.

I truly enjoy writing, but the pressure in my brain makes it extremely difficult. I always have a headache, it just varies in how strong it is. My ability to read is affected by the pressure in my brain. At this point, some days I’m barely able to read at all, but most days I’m able to read for short moments of time, usually adding to at least one full hour that day. Other common issues I fight with each day are things such as struggling with word choices (ability to use / even remember what the correct word is).

All of these things make it difficult to write, and I truly miss it. Luckily today is a surprisingly good day in terms of my reading ability, and I’ve been able to read for longer moments of time.

That’s why I’m able to write today – and I have a lot to share.

After the first biopsy, I had learned that it was not glioblastoma, that was amazing. While I was in the needed waiting time, my difficult medical case was taken to a tumor review board and was looked at by many doctors from all specialties.

Soon, I began tests again. In total, I have had several CT scans, many MRI scans (I’ve lost count) and one PET scan. I’ve had enough MRIs to find them oddly relaxing, despite not being able to move for roughly an hour.

My medical case was updated with my recent test results and all scans and it was again reviewed by many doctors at the tumor review board.

It was still appearing to be cancer.

This time it appeared it may be a very rare form of lymphoma. This rare form is treatable, but would still most likely take my life in roughly three to five years.

Next up was my second biopsy.

https://www.instagram.com/p/BOVo1x0AHmo/

My second biopsy had a small delay due to a common cold and ended up being scheduled for December 23rd. It all went very well, and I was able to leave the hospital on Christmas Eve and even made it to Christmas Eve mass.

Since then, it has been focused on waiting again…until yesterday.

Day number 96.

Yesterday I was finally able to hear results from my second biopsy.

…it’s not a rare lymphoma.

…it’s not cancer.

…it’s not even a brain tumor.

It’s a large inflammation in my brain and it shouldn’t have any effect on my life expectancy.

We don’t know anything else yet, but this is amazing! I can’t say thank you enough to everyone who has prayed for me and my family. I’m still trying to wrap my head around all of this.

The fight isn’t over, but it’s getting easier.

Featured image: Point Reyes National Seashore, California. (Day 140)

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Life’s Weird – Part 6

I think this may be it. This may be the end of the “Life’s Weird” series. I will continue to write about similar things, I will continue to share what is going on, but I think this will be the end of “Life’s Weird”. Life is weird, but weird has become the new normal.

It has been 50 days.

50 days since I woke up in the hospital. 50 days of unknowns. 50 days of waiting to hear more.

It took less than 50 days for this to become the new normal. I’m not sure when it happened, but one day I woke up and it was just another day. Just another day starting the same way. Just another day of waiting to learn more about what is going on. Just another day of not being able to drive to the places I need to go. Just another day of taking a break from a project because I’m suddenly unable to read. Just another day of small frustrations that occur without warning. It’s amazing how quickly all of this became the new normal.

So, what is all of this?

We know I had a seizure on October 1st. We know that’s when we found out I have a brain tumor. We know seizures can often be caused by the brain tumor itself. We know the brain tumor is located near my left temporal lobe. We know the brain tumor is applying pressure on that area of my brain, which is the primary speech and language recognition center. We know that having pressure on that area of the brain is what causes me to have issues reading and remembering word at times.

Then I had a biopsy to learn more.

We know brain surgeries are amazing and fascinating. We know I had a small incision not far from the back of my left ear. We know I had a small area of my skull drilled open for the biopsy as well. I now know that this is all incredibly painless. We know the results of my biopsy came back very different from what several doctors had expected. We know the biopsy was able to rule out Glioblastoma, a malignant brain tumor which gives a one-year or two-year prognosis (this was what the doctors had expected). We know that’s really good news. We know they were able to rule out several other things as well. Based on several scans taken at different times, we know the brain tumor is affected by the steroids I was prescribed. We know the steroids have caused the brain tumor to shrink, which makes us one step closer to figuring out what the diagnosis could be.

We don’t know much else.

We don’t know what the full diagnosis is. We don’t know if it is cancer or not. We don’t know how long it will take to figure it all out. We don’t know how long I’ve had the brain tumor, or how fast it grew to the size it was that caused the seizure.

We do know the waiting game continues.

For now, we continue to wait. We wait for the steroids to get completely out of my body. We wait for the brain tumor to start growing larger again. We wait for the next round of scans to see if there have been any changes. The next scans are scheduled for early 2017…so we wait, and focus on the quickly approaching holidays.

Despite the stress that often comes with waiting for answers, there is a lot to be thankful for this year and a lot to celebrate.

Life is weird, but weird has become the new normal. It’s amazing how fast that happens.

Featured image from Merryvale Vineyards, St. Helena, California. (The Last 96 Days)

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Life’s Weird – Part 5

Back in Part 3, I mentioned that the unknown of what’s going on and waiting to learn more is the worst part of all of this. Well, round 2 of the waiting game isn’t any easier. I truly thought it was going to be easier, after all, I at least had some answers this time. Well, I was wrong. The waiting game is still awful.

A little over a week ago, I had my first brain surgery. It was just a small biopsy and the whole experience was absolutely fascinating. The biopsy went very well and I was able to go home the very next day. It was all amazingly painless (seriously, no painkillers needed) and recovery was/is simple.

The only bad part: no updates on the results for a week and a half.

Good News: The wait is almost over!

https://www.instagram.com/p/BMAn3H_gkov/?taken-by=wester_brad

Life’s weird – I never would have guessed I’d be this excited to hear potentially scary news. Like I said in part 3 and again today, waiting really is the worst part.

Earlier tonight I was talking with a good friend about this exact thing. It was just a normal and honest conversation, but I believe it’s worth sharing. I didn’t ask his permission to share it (sorry buddy), so I’m leaving the details out. (This part of the post may not mean anything to you, but I believe I’m being asked to write it for someone.)

Yes, the waiting is the worst part – but it still isn’t that bad.

Friend: “How are you holding up?”

Brad: “Doing well. Ready for tomorrow (appointment is scheduled for 12:45 PM).”

Friend: “You’ve handled this waiting (word not needed) way better than I ever could.”

Brad: “Some moments are better than others. I get stressed out over it, but then I just remind myself that it’s not so bad. I’m much better off waiting and walking into the hospital than those who are being rushed in by ambulance right now. My ability to wait is a blessing itself.”

…wait. What did I just say? Did I really just say that? That’s not normal. I didn’t even think it through before sending it. I’m really not that intelligent or well spoken. So how did that just come out? Here’s my guess…

Mark 13:11 — “…when the time comes, say whatever is then given to you. For the words you speak will not be yours; they will come from the Holy Spirit.”

God has definitely supported and helped me through all of the craziness that has happened in the last few weeks. Looking back, I’m even able to see how God started to prepare me for this journey several years ago and God continues to help me each day.

So, what’s my point in sharing this with you?

We all have things that worry us each day. We are all up against something that’s stressing us out right now. No matter what it is, you’re not in it alone. Whatever it is you’re fighting, you’re strong enough to get through it. You may be unsure about what to do, you may not feel strong enough, you may be fearful that you’ll make the wrong decisions or say the wrong things – you won’t. Trust in God and say, or do, whatever is given to you.

Featured image: Napa Valley, California. (Life’s Weird – Part 6)

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Life’s Weird – Part 4

Get the kids out of the room. Here come some bad words.

I don’t yell very often. I’d say I rarely yell, and when I do it’s not even really yelling. It’s not that I think I’m somehow above it, I’m definitely not. I’m just really bad at it, so I try not to. When I do yell, I just get slightly louder than normal with a frustrated tone, often using the wrong words and not making any sense at all …always proud moments for me.

The last few weeks have been crazy, and I now I need to yell.

Hey, Blue Apron. Fuck you.

Stop sending me your shit and officially let me know that I’ve actually canceled my account this time. Your overpriced food is convenient and usually pretty good, but I don’t want it! I liked the idea at first, it was great to try new recipes, but I don’t want it every week. And to avoid the weekly delivery, I have to go on your website and choose to skip the following week’s delivery. I’m glad I can do that for several weeks in advanced, but eventually, I forget to check the date and then, BAM, I get an email saying a bunch of food I didn’t order will arrive tomorrow — usually right after I go to the store and buy a week’s worth of food. And you know what, the worst part of the surprise delivery is that I appreciate the business model behind it. Seriously, fuck you. You’re really good at what you do, and that makes it’s even more annoying.

Yes, you heard me. You’re really fucking good at what you do. I admit it. That being said, you have problems. Here are a few quick things I’ve noticed.

Your recipes come with the estimated amount of time it takes to cook each meal. Fucking double it. I’ve never been able to come close to the numbers you put down.

Maybe I’m just a bad cook and don’t understand what I’m doing, but your instructions are confusing as hell. If I were sitting in a quiet room with just 2 things in front of me — 1 being your single page instructions on how to cook a simple hamburger and the other being a very large book on how to fly a space shuttle to the moon — I’m certain dinner that night would end up consisting of splitting BBQ spare ribs with Harry Caray. It would just be easier to do.

Now that takes me to last night.

First off, you forgot to include the cooking instructions in the surprise delivery this week. It just wasn’t in the box. That type of thing will happen from time to time, and you’re even prepared for it. I was able to pull up my delivery history and get all info right from my phone. Good work — except somehow it’s even more confusing to read online because you put links to your other meals / wines / cooking tips / etc. all right next to it. It get’s overwhelming and that pushed me over the edge last night and I still don’t forgive you.

My wife had a rough day yesterday and my one goal was to make a nice dinner for her to end a long day. I couldn’t do that for her – and it’s your fault.

Not really, but I’m blaming you anyway. No, it’s not fair for me to do that, but I don’t give a shit. It’s payback for all the times you’ve made me feel like a complete moron with your difficult to understand cooking instructions.

Sorry Blue Apron, you don’t deserve this – but fuck off.

Clearly, Blue Apron isn’t at fault for last nights frustrations. It’s me, well kind of – really it’s the brain tumor that I first mentioned a few days ago. It’s located on my left temporal lobe and is adding pressure onto two parts of my brain. Those two parts impact my ability to read and process words – not all the type, but sometimes. That means my writing is slower, my proofreading less accurate, at times I may use the wrong words and won’t even notice or I may not be able to remember a simple everyday word. Most annoyingly, I won’t be able to say a good friend’s name from time to time. So if that happens, I apologize. I still know exactly who you are, I just may not be able to actually say your name for a little bit.

It all sounds worse than it really is. Yes, it is frustrating and annoying, but it isn’t that big of a deal. All of it comes back. I’m not forgetting anything or anyone. I just can’t always get the correct words out when I want to. Or, in the case of last night, connect words together to understand what I’m actually reading. It all comes back, it just requires patience — and a sense of humor.

Life’s weird – sometimes I think I’m about to completely lose it and yell, but I end up just laughing instead. Again, I don’t take credit for that – but I sure do appreciate it when it happens.

Oh, and sorry again to Blue Apron. They’re good people and worth checking out if you dislike planning meals for each week. I just needed to throw an irrational fit for a moment.

Featured image: Lombard Street, San Francisco, California. (Life’s Weird – Part 5)

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