4/28/2020
On April 2nd, I had a session of radiation done on a tumor in my brain. The tumor sits just above my right ear on the edge of my brain. The treatment session was short and pretty simple and, for the most part, I was symptom free following the procedure. On Sunday, April 19th, I developed a slight headache. Normally, with radiation, it can take some time for the impact of the radiation to set in. Swelling can develop over time and there can be some slight side effects, like headaches, that set in. Naturally, I assumed this was just a headache that would pass. I struggled to sleep a little bit that night, mostly because the headache wouldn’t subside, but I was able to get a decent amount of sleep.
After dragging myself out of bed in the morning, I still had the headache AND I was fevered. I hit 99.7 on the thermometer and was struggling with chills. It wasn’t terrible, but it certainly wasn’t what I wanted to be dealing with! Eventually, Kim talked me into some pain meds and we were able to get the fever to break. The headache went away and I started to feel normal again. In the early afternoon, just after getting off of a call, Kim and I were chatting in the front room. At this point, I started to feel a little funny and my body began acting weird. My lower lip began to twitch uncontrollably and my speech became slurred. Mentally, I was still very aware of what was going on, but I couldn’t get the words out like I wanted and my lip wouldn’t stop shaking. Then…it went back to normal. It was weird. Naturally, Kim was concerned. So was I. After a brief spell of normalcy, this started back up again! So, Kim called 911 to see about an ambulance. We ultimately decided, however, that Kim would run me to the ER herself, especially since I was still cognizant and aware of my surroundings. We got a couple things together and jumped in the car!
While on the way to the ER, my symptoms would come and go and they slowly changed. My eye sight would track to the left and I had to work to keep my eyes looking forward. At one point, my entire head started twitching to the left and I had to close my eyes and breathe through what was going on. Interspersed throughout this was slurred speech that would come and go. It was a really weird ride and experience. All along, of course, we assumed it had something to do with the radiation of that tumor.
After arriving at the ER, they threw a mask on me, which didn’t last long, and they put me in a room. We explained what had been going on and the symptoms would come and go while we chatted. I eventually picked up the phone to call my bishop to see if he was around. He is a social worker and spends a lot of time at the hospitals. I figured if he was around he could give me a priesthood blessing. While I was on the phone with the bishop, my speech went from normal to slurred and then took a HUGE turn for the worse… My whole body turned to the left. My head rolled up and to the left, along with my eyes. In fact, half of my vision was black because my eyes had rolled up into my head far enough. I was no longer able to breathe in OR out, despite oxygen being placed on me. The only thing I still had control over was my right hand. Kim says she has seen a lot of seizures and this was a bad one. I wasn’t jerking uncontrollably like you sometimes see, but I continued to twitch and was unable to breathe this whole time. I was mentally aware of what was going on. My bishop was on the phone and listened to this all happen, including Kim trying to help me calm down and breathe. The thoughts went through my mind that I could die. I wasn’t breathing and I didn’t know if or when this would stop. All I wanted was for my wife to know I loved her. To say “I love you” to each other without words, we squeeze three times. My right hand worked and I just kept squeezing her arm telling her I loved her. If she was going to watch me die, I wanted her to know I loved her. It was that simple. Of all the things I’ve been through in my life, in this moment I felt more helpless than I may have ever felt before. I honestly believed my life would end.
Then….
I began to relax.
And I began to breathe.
And I knew I was coming out of it.
What. A. Relief! I didn’t die! Wahoo!
Of course, I knew the symptoms had been coming and going and so I assumed another one would hit eventually. But luckily, one never came. That was it. After that episode, I didn’t have any other episodes of seizing. It took a minute, but they eventually got me into a CT scan to see what was going on. Dr. Wilden, who was fantastic, said there was a spot on the image that might indicate bleeding. If that were the case, then steroids were off the table. That was unfortunate, because the steroids have helped me a lot when stuff like this occurs. So, we waited. Eventually, it was decided it might just be calcification and I was allowed to get some dexamethasone. 10 mg at that! Which is a lot. They also gave me a large dose of Keppra, an anti-seizure medication. It was also decided that I would be taken up to Huntsman for an MRI. In small towns like Gunnison, they don’t have MRI machines readily available for scanning. That meant, given the seriousness of the situation, I needed to be transported up north. Not only for the MRI, but if the MRI indicated something serious, they wanted me there in the event emergency surgery was required. The downside, once again, is that Huntsman doesn’t allow visitors. As a result, Kim wouldn’t be able to be with me. I’d have to spend any and all time at the hospital without her and any other family. Again…I don’t fully understand, but you deal with it.
Prior to leaving, I was given a priesthood blessing. I testify of the power of the priesthood. It is real. I invite and encourage all of you to seek the comfort, peace, and blessings the priesthood affords us. Please ask and exercise faith in your Heavenly Father to bless you with what you stand in need of.
Eventually, they got me in the ambulance and we headed up. I was pretty tired (not just from the episode, but the lack of sleep and the fever and all that stuff earlier on in the day) and tried to sleep when I could. We made it up to the hospital around 8 pm, but then it took about half an hour just to find where I needed to go! I had a room reserved at Huntsman, but Huntsman doesn’t have an ER. So, they took me to the U of U ER after looking for the ER at Huntsman. They unloaded me from the ambulance at the U and wheeled me in. They were informed they were in the wrong place and told where to go. So…they loaded me back into the ambulance and commenced driving around again. Again, we went all over and couldn’t decide where to take me. Eventually, I picked up my phone and called After Hours Emergency at Huntsman for directions. After a short time on the phone, some staff came out the front of Huntsman and told them I was in the right place. I was able to be offloaded and put into my room. It was a relief to finally be “home” for the time being! The ambulance staff was great, but it was certainly a learning experience for us all haha
After settling in, I was in for a long night. I had a bunch of people to talk to about what had happened and what was going to happen. I eventually was taken down for my MRI around 9:45 pm and I believe I made it back to my room around 11:00 pm. At this point, I was exhausted AND I couldn’t drink anything. On top of that, I had an EEG scheduled and that would take place sometime soon. Around 12:30 am, the tech came in to do the EEG. She had to do all sorts of scrubbing of my head to get the things attached. After a while, the machine was finally attached. It took half an hour for the test to run. They basically monitored my brain for seizure activity to see if they could get a clearer picture of what was going on. At this point, I still don’t have answers as to what happened or what was going to happen! Finally, at 2:30 am, the EEG was done and I was free to sleep. Well…until 4 am when the nurses came back in haha So I got about 1.5 hours of sleep until they came in. After they came in and gave me drugs and drew labs, I got maybe a half an hour of sleep before the doctors and nurses came in for the day at 7 am. So, despite sleep deprivation being a trigger for seizures, I didn’t get any sleep. Go figure! At least I was in a hospital if I had one…
At about 5 am that morning, I’d been told I could drink water. Surgery wasn’t going to be imminent, if it needed to happen, and I could eat and drink. I was told that the results of the EEG showed no signs of seizure activity, which is great. I was also told that my MRI would be reviewed by the melanoma tumor board to decide what to do moving forward. Surgery was still on the table, but it could also be nothing. Just had to wait and see…
I did meet with two neurologists during my first full day there. I was told I’d be on Keppra for the rest of my life and that my activity would be significantly restricted for 3 months (ie no driving, climbing, bathing, swimming, etc.) in the event another seizure hit. All disappointing items. I appreciate modern medicine, but to be told I’d be on the drug the rest of my life isn’t something that I’m okay just accepting. I had questions, but didn’t even have answers to help guide the questions. Fortunately, answers weren’t too far away…
I managed to survive my one full day at the hospital without going too crazy. I napped a lot. Showered. Ate hospital food. I did my best to keep it healthy! And I drank hospital water. Ugh… I know this is weird, but if it isn’t Kangen water, I just don’t want it! When your mentality shifts, it’s difficult to be “okay” with something you know is wrong. I know eating donuts is wrong, so I choose to not eat them. Even if I cave, I mentally struggle with it because I know what it’s doing to my body. When I’m forced to drink non-Kangen anything, I struggle mightily. Hopefully that makes sense… The big downside to all of this? I showed up to the hospital with slippers and my phone. Nothing else. No extra clothes. No razor! I hate facial hair! No books. No phone charger. Nothing. I understand the circumstances didn’t really facilitate me showing up packed and ready, but in the past Kim was able to bring this stuff to me. Since she couldn’t come in, it didn’t make sense for her to drive 5 hours to hand me a bag when I might be going home soon. So…I endured lol
The following morning, after a much better night’s rest, I was told I’d be discharged. I hadn’t had any seizing issues and the MRI didn’t show anything glaring. While we waited for further answers and direction, I was going to be able to go home. When I called Kim to tell her, she was already on her way! She really is the best! She had my bag packed with clothes, a razor, my charger, books…everything I’d need for a longer stay. Fortunately, she’d just pick me up and take me home! And yes…I did shave in the car on the way home. I couldn’t last any longer!
So… What then? I was placed on 2,000 mg of Keppra every day along with my steroid. The drugs do awful things to me. Both physically and mentally. The Keppra makes me very on edge and I don’t like it. I am constantly having to talk myself through things and settle down. I have to remind myself that the drugs are helping with seizures and I need to work through things. But, fortunately, I’ve found some reprieve. On Friday, I got a call from radiation oncology. The review board feels this was an isolated incident due to the radiation. There is no need for further radiation, gamma knife therapy, or surgery to address the issue. The MRI showed no signs of disease progression anywhere in the brain. It also showed a decrease in edema (swelling) throughout the brain, including around the other 3 tumors that were never irradiated. How wonderful is that?! He also told me I could possibly be off of Keppra in a few months! Wahoo! I did, however, have an appointment with a neurologist the following Tuesday to discuss the seizures more…
That brings me to today, Tuesday, April 28th. I had my appointment with the neurologist today. This appointment was challenging at times. I dislike when doctors speak to you as if you should already know everything. I’ve had multiple sources tell me multiple things and I needed answers. This doctor told me I would need to be on Keppra for 2-5 years. I told him I couldn’t do that. The side effects are too much. His response was basically “You want seizures instead?”. He never provided context. He certainly hadn’t explained anything. Yet, he acted as if I should already know what was going on. Long story short, things were hashed out and I think we came to a mutual understanding. This is where we are at…
The little nuances prior to my seizure? They were seizures. So I didn’t have just one isolated seizure. I experienced several seizures, one of which was major. The many seizures indicates my chance of having another is roughly 85%, according to him. That is regardless of the cause of the seizure. The EEG not showing signs of seizure activity is good, but it doesn’t mean there aren’t fish in the pond. I will have another EEG in 3 months to see if any seizure activity is happening. My dose of Keppra is being lowered from 1,000 mg twice a day to 500 mg twice a day. I am also being given a vitamin B supplement to help with the side effects. He eventually explained the 2-5 years thing… If I go two years without another seizure, we can discuss tapering me off the medication. If I continue to do well while tapering, I can completely get off the medication. Sounds like a good deal to me! I will periodically visit with him to discuss side effects and any possible episodes to ensure my treatment is going well. By the end of the challenging conversation, I feel like we reached a good place. I can tolerate a pharmaceutical for 2 years if it helps me work through this and if there is an end in sight. Time will tell… I want everyone to understand that there is nothing wrong with taking control of your health. If your questions upset a doctor, that’s alright. It’s your health and your well being. If further context and clarification is needed, ask. Don’t just go along with what they say because it’s the right thing to do. This is my body. This is my life. I want to make informed decisions and I want to be involved. Please do the same!
All in all, this has been a wild week. I’ve learned that life is fragile. Any moment we can go from feeling normal to dying. That’s where I went. I went from feeling good to seizing to the point that I couldn’t breathe and thought I would die. We need to learn to cherish the moments we have. And we need to put ourselves in a position where we are okay when our time is up. If I would have died, I would have died in peace. Obviously, I don’t want to go. I certainly don’t want to die while Kim is watching and trying to save me. But I had peace. I’m in a good spot spiritually and emotionally. I want to invite each of you to look inward and do what needs to be done to find yourself in a similar position. There are never any guarantees in life. Faith over fear is real. As we go through difficult moments in this life, we can shrink or we can thrive. I’ve learned that embracing challenges is the best way to grow and maximize what life has to offer. I don’t ever want to shrink.
One more bump in the road behind me. That’s one step closer to where I want to be…
#FaithOverFear
