Brain Surgery Update

Several weeks ago, after three failed attempts to manage seizures with steroids, I met with Dr. Randy Jensen, the neurosurgeon at the Huntsman Cancer Institute (HCI) to discuss what to do moving forward. After a lot of discussion, it was decided that we would do an extended taper off of the steroid. The taper was meant to be seven weeks long, as opposed to the prior three tapers that were between ten and fourteen days long. We all felt those first three tapers were far too short. So, I embarked on a journey with an extended taper in the hopes surgery could be avoided.

The first 3.5 weeks of the taper went really well. I didn't have any issues pertaining to an onset of seizures and that was great. However, toward the end of the 1 mg twice a day dose, almost four weeks into the taper, I started to become rather fatigued. Lots of naps and no energy. By the time I started the next step in the taper (1/2 mg twice a day), I was started to have weird feelings in my chin/lip and in my tongue. Both symptoms I had experienced prior to seizures occurring. So, we called HCI to see what to do. After speaking with Dr. Jensen's team, it was decided we would go back to the 2 mg twice a day dose and restart the taper, since that was the last dose where I didn't have any issues. So, we reset.

The following week, we went up to Lava Hot Springs to spend a week with Kim's family. It was great to spend some time away from home, relax, and visit with family. However, toward the end of the week, just after starting the 1 mg twice a day step in the new taper, I found that I was more tired than normal. I was sleeping a lot better, but I was more tired during the day as well. Not to the point that I was useless or slept all day, just more tired than I would expect. By the middle of the following week when I started the 1/2 mg twice a day phase of the taper, I was again having issues with my lip/chin feeling funny and my tongue feeling weird. This happened again at the exact same spot in the prior taper attempt. Frustrating. I was hoping for a bit more progress.

So, what now?

At this point, that's five failed attempts to taper off of the steroid over the course of three months. On top of that, I'd been experiencing several side effects from the steroids. Those side effects are as follows:

-Constant hunger
-Weight gain (See below picture. And that is me pushing my stomach out as far as I can, not me relaxed, but you get the idea. I've put on some weight because I'm basically starving all the time and the steroid naturally causes you to retain weight. That's why my face looks like a half-albino bowling ball! haha)
-Puffy face
-Aching knees
-Difficulty Sleeping
-Extremely painful cramps in my legs while sleeping
-Painful cramping in my fingers

Haha This reminds me of the Grinch for some reason. Small body and large stomach! haha

You get the idea...

So I've been on steroids for three months, gone through five failed attempts at tapering off of them, and experienced several side effects that impact me physically and mentally. The question now became do I continue on the steroids in the hopes that something different happens next time or do I opt for brain surgery?

After much discussion with Kim, I decided that it was time for surgery. My biggest concerns are that the steroids are doing long term damage to my body at this point and they have failed to achieve the desired result over an extended period of time. Brain surgery would for sure address the issue of the tumor and I would be able to get off of the steroids quickly, as opposed to continuing to play this dance for who knows how long. Also, given the location of the tumor, I felt and continue to feel comfortable with surgery. So, I called HCI to find out what to do with my steroid dose and schedule an appointment with Dr. Jensen. After speaking with his nurse, we re-upped my steroid dose to 2 mg twice a day until I met with Dr. Jensen.

Yesterday, I was finally able to meet with him and discuss my concerns and get his opinion. I explained to him the issues I'd been having with the steroids. I've explained them to several people at HCI before and no one could explain the intense leg cramps at night. However, Dr. Jensen indicated they are issues from the steroids and his big concern is that the cramps are early onset of myopathy. Myopathy is basically a disease of the muscles where the muscle fibers don't function properly and results in muscle weakness. Basically, it's early signs of long term muscle atrophy. Dr. Jensen expressed concern about the long term impacts of the steroids and felt that it was likely time to go the surgery route. It's always nice when you hear a doctor come to the same conclusion as you. It's a different story when the doctor wants to go a different route than you. So, after a lengthy discussion about the steroids, my thoughts, and his thoughts, it was decided that brain surgery would take place.

I also discussed with him some random bouts of twitching I've experienced in my left ring finger. I've never really experienced it before, but quite regularly as of late my left ring finger will twitch from side to side. I asked him about that. He said sometimes dehydration can cause that (That's definitely not the case with me...), but he also said that they are likely mini seizures. He said the purpose of the anti-seizures meds I'm taking is to keep seizures from generalizing to the entire body. He explained that many people on anti-seizure meds may experience localized seizures like I've been experiencing. So, there ya have it. I've been having mini seizures for who knows how long! haha It's nice to have answers though! That further confirmed my decision to just get the tumor out!

So, on Monday, August 3rd (just a few days from now), I will go up to Salt Lake to have a brain MRI done in preparation for surgery on the 6th, which is a week from tomorrow. I will also have to be tested for COVID-19 and have lab work done. Following that, I have to self-quarantine until surgery, which will be easy since I work from home! I will then find out on the 5th what time my surgery is scheduled for. The last time I had surgery on my brain, it was under very different circumstances. That was an emergency situation and the belief was that I would need to be in intensive care for at least 10 days and then spend additional time at the hospital. This time, however, Dr. Jensen believes only one night in intensive care and then a couple of nights in acute care. Much nicer! His only concerns regarding long term issues are permanent weakness in the left side of my face and my left arm. However, he doesn't anticipate that happening. He says I may experience that for a week or so following surgery, but nothing long term.

The big downside to all of this? Kim can't be there. In fact, I can't have any visitors at all. Definitely not ideal. Obviously, I'm an adult and can manage, but there's just something about going through these things alone. I mean, I'm having my skull cut open, my brain cut through, a tumor removed, and then being asked to recover alone. To an extent I get it, but there's a large part of me that just doesn't get it. Battling cancer is more than a physical battle. It's a mental, emotional, and spiritual battle as well. Being asked to go through major surgeries like this alone seems wrong to me. That being said, that's all out of my control and we do our best! I trust in God and know that I won't truly be alone. Even with Kim not being there physically, I know she'll be talking to me and helping me through from a distance.

At the end of the day, I'm very much at peace with the decision to have surgery. Kim and I both feel good about the decision. We feel good about Dr. Jensen. We feel good about getting me off the steroids. And we look forward to moving on from this adventure with seizures and steroids.

Ultimately, I know who is in charge. I trust in God and in His goodness. I know that His plan isn't always the same plan that I have for myself, but I know that He wants what is best for me. I also know that as long as I do my best to live the gospel, no matter how imperfectly that may be, I will be taken care of. While I fall short every day, I continue to see His hand in my life on a daily basis. I trust in Him and know that He will sustain me and help me through whatever comes my way. I know that He will help me through this surgery and I'm not afraid of what happens. The gospel brings me so much peace and comfort. I'm grateful to know that it also bring Kim the same peace and comfort. I oftentimes feel like I'm lucky to be the one dealing with cancer instead of having to watch Kim deal with cancer. That being said, we are all given unique trials custom made for us. I know how strong Kim is and I know that she is strong enough to endure whatever she is asked to go through. As I have stated before, I will never regret having to go through this battle with cancer. It has taught me more than I could have ever learned. It has brought me closer to my Heavenly Father and Savior than I could have otherwise come. It has brought me closer to my wife. It has brought me closer to family and friends. I'm truly grateful for this trial.

In a couple of weeks, I'll be on the other side of a second brain surgery in just over 18 months. I'll keep everyone updated! Thanks for all of the support! Oh... I've also asked for photos. I'm hoping to get a picture of my brain and the hole in my head! Doc seems to be on board! Wahoo!

#FaithOverFear