The next chapter

In my previous post I mentioned our visit to the radiation doctor, so I’ll skip that for now and briefly talk about our trip to the east coast.

Before we found out about my cancer, we had purchased plane tickets to visit family in New Jersey for the week of Memorial Day. Since my surgery we’ve asked each doctor if I could still make the trip. All of them said yes and highly recommended it. They said getting out of the house would be good for me. To be honest I was a little hesitant… in fact I almost didn’t go.

Everyone knows when you don’t feel good the best thing you can imagine is just being home. You feel comfortable, you know where everything is… you just feel “right”. Anywho, my seizures is a great example of NOT feeling right (so is explosive diarrhea, who wants that shit? ANOTHER PUN!).

When I have a seizure I get really tired. Sometimes the tiredness last for just a few minutes, other times several hours (that’s where my spontaneous naps come from). I felt like I might be a burden on everyone and didn’t want to ruin the trip.

It turned out to be the complete opposite. Everyone understood my situation and accommodated me perfectly (my wife even tried to get me a wheelchair at the airports– what the hell?). Needless to say, we have some amazing friends and family on the east coast that were totally sympathetic. They had a BBQ on Memorial Day which I totally missed half of because I snuck away for a nap. It felt awkward when I came downstairs but they acted like it didn’t even happen. Or maybe I’m like a ninja and they didn’t notice me? I guess we’ll never know. *throws smoke bomb and disappears*

So during our previous trips over there we did a lot of train rides and walked a lot in NYC. This trip we drove everywhere. Its definitely not as easy but it makes for a quick retreat when I’m not feeling well. I could go on and on about our trip but to make a long story short… we had a great time. It was a healing process to me. At the start of the trip I was depressed and dealing with insomnia, but by the end I felt so much better and was sleeping through the night.

While we were there we gave my medical profile to John Hopkins Hospital. Its one of the best (if not the best) cancer centers in the US. I know its on the east coast but that’s not even an obstacle to us. If someone told you “your health is going down the shit-hole” wouldn’t you do anything to anything to prevent it? Damn straight I would.

But I’m not gonna lie, it was great to finally get home. Not that I wanted to leave our family and friends in New Jersey, and the great food, and the beautiful city view… but the plane rides were ridiculous. Sitting for 6 hours in a sardine can is miserable. Plus we had so much luggage to cram into our car; even that wasn’t comfortable. I didn’t even unpack the following week. I just slept and recovered from the flight and drive home. Plus I waited long enough that my wife ended up unpacking for me 🙂 Score one for Brandon.

So lets go back and talk about the “fun” stuff. (note: use of the word “fun” might not be applicable for all context of the following information)

As I mentioned already, we finally visited the radiation doctor. So lets summarize all the doctors and what their views are about having a resection (removal of tumor… a.k.a. brain surgery):

  • Neurosurgeon – Put the ball in my court about the resection, he wants me to make my own decision
  • Oncology (chemotherapy) – Normally recommends resection to make chemo more effective
  • Neurological Medicine – Doesn’t care either way, just wants to find the right dosage of medicine to prevent my seizures
  • Radiation – Also recommends resection to make radiation more effective

Here’s something I’ve learned about brain radiation: to reduce the chance of having dementia later on in life, you can only have brain radiation ONCE. Dementia? Seriously? I mean I guess I shouldn’t be that worried about it. I mean… I’m not going to know I have dementia, my wife will be the one dealing with it 😉 . But in all seriousness, that freaked me out when he told me that. And even more scary, once you have radiation the brain creates scar tissue. Scar tissue then makes surgery later on much more difficult. What the hell? Here I am set on the fact I don’t want my noggin sliced open like a watermelon (a.k.a. bran surgery) and then I learn this shit.

Basically… if I go with only doing radiation and chemo and that doesn’t work… I’ve screwed myself. So that means I only get one shot in making the right decision. But when I told my radiation doctor that I was really hesitant about having a resection done, he recommended a Functional MRI to show the Loma Linda tumor board. Functional MRIs, or fMRI for short, is basically a normal MRI, except it takes like 5x longer and they ask me questions during it to see what part of the brain lights up. Its a nifty way of mapping out brain areas to see if resection would be worth it.

My fMRI is scheduled for this coming Wednesday. Bummer… I just finished bitching about sitting in a sardine can for 6 hours, and now I find myself going into another one for 90 minutes. And the worst part is this sardine can doesn’t have a bathroom or women serving me drinks. I guess this falls in the category of “it can always be worse”. Anyways, once that’s done the tumor board reviews it and we start the next chapter: treatment. I’m scared and excited. Like 50% scared, 50% excited. Well, more like 60/40. Maybe more like 70/30. I don’t know… 80/20 maybe? I’ll think about it and get back to you.

On a more personal note, I’ve been sorta scared to blog lately. I’m not sure if its the medicine or the cancer, but I’m having a hard time talking and writing. I’m mixing up words, saying sentences backwards or forgetting words and all kinds of weird stuff. Here’s a scary fact: since I started writing this blog post I’ve had to ask people about twelve times to help me remember a word. Scary huh? I really hate it because I’ve never been this way. I hope its just the medicine.

My medicine doctor did change my prescription recently, and I feel it was for the worse. I went from 2 seizures a day to a seizure every 2 hours. It was never this bad. When we called the doctor about this, all she did was up the dosage. I want my old medicine back, dammit! Everyone around me pretends like its not happening. I’m happy they’re supportive like that but I recognize it. I probably notice it more than them because we’re our own worst critic.

If its not the medicine then it might be the crain bancer giving me drain bamage 🙁