Oct, Nov, and 1/2 of Dec Health Update

In this post I’ve tried to condense how I post health updates with the goal of making these posts shorter and thus likely to get posted more often in the future.

Things went pretty well through Oct. and Nov. with the good Oct. 7 scan under my belt. October’s chemo was another ass kicker, but November’s was a little better because my doc let me know I could take more anti-nausea meds than were originally recommended. This past Monday (Dec. 7) I had my next scan, but the results are iffy. A roughly 1/2cm x 1/2cm spot showed up near the surgical site in my brain. This spot could be one of two things. It could be a lovecraftian tumor progression that GBM is known for.  However, it could just be radiation necrosis, which is much preferable. My doc has me scheduled for another MRI in 4 weeks instead of the standard 8 week interval. This upcoming scan will show if there is any tumor progression. Even though we’re worried, right now we’re trying our best to not stress out so much. I also have started chemo round 5 as of yesterday.

Due to a very new approval from the FDA, I’m most likely going to be able to use a medical device called Optune, which is something I’ve wanted to do from the start. Optune is a device that GBM patients wear on their heads as much of the time as possible. The device emits an electrical field that disrupts cancer cell division without harming healthy brain tissue. A large clinical trial has shown that using Optune is as effective as chemo for GBM patients with the added benefit of no horrible side effects. When I was diagnosed with GBM, Optune was only approved for use on recurrent GBM patients. Since I didn’t have a recurrent tumor yet, I didn’t have access to the device for treatment of my GBM. And without insurance the device costs about $17,000 per month. Now that a) I may have recurrent tumor growth and b) the FDA approved Optune for new, non-recurrent GBM treatment, I will soon get to look like a character from a sci-fi flick (which I’m totally down with and excited about) on my insurance company’s dime.

Here’s the gear:

Optune-System

Here’s someone with it on:

optune_patient

This is how I’d really like to look ^_^:

From Zero Theorem

From Zero Theorem

 

I’ve also begun the enrollment process for a 3 year UF research study focusing on a drug treatment for GBM. The study will be conducted in the UF building where Alex works :). I have to have some kind of special protein in my blood to be admitted to the study, so I gave a blood sample last Monday and will find out if I can participate in the study in a week or so. I’ll post an update once I hear back from them.

Well, that wasn’t short. But hey, I got a post up! Hope you all are doing well! One thing that continues to be very important for me is finding new music. Music is something I’ve always turned to in order to feel good. Each month I try to research new musicians so I’m not stuck too long on a single act. Recently I have been bad about posting up my mixes, which you may or may not listen to. My goal is that before Christmas I will put up a hefty one that contains the mixes I’ve made for Aug., Sept., Oct., Nov., and Dec. A couple of those months had more of a theme instead of the traditional mixed bag of new finds. Hope to talk music with you guys soon.

Thoughts on hair from cancer treatment

After the chemo & radiation ended, I shaved away my mohawk since its primary purpose was to give the finger to the radiation machine it no longer had to see. It takes a lot longer than I expected to have your hair grow back, though. I’m still largely bald where the radiation was hitting and have lost a little more hair since the end of treatment. I’ve tried a ton of different bandannas with different folds, staying bald, or just letting my hair grow naturally, but it seems no matter which way I go, I catch people rubber necking. At first I was like “I don’t care,” but now I feel like saying “@$%^&* $#$% @^#*%!” Here’s how some of the options play out if you’ve got some weird-ass hair.

  • Bandannas (“cancer fold”) – With certain folds you look more like a cancer patient. The looks you get are more out of pity.
  • Bandannas (“thug fold”) – A good portion of folds will pretty much have most elderly people look at you with angry and disproving eyes…that is actually pretty funny but it happens to be such an annoying look.
  • Bandannas (“Biker fold”) – If you return a look while having a biker style bandanna + fold, the other person at least quickly gets their eyes straight.
  • Shaved head – This is probably the safest look to have. Maybe some person or another will think you’re a skinhead but at least for me I wasn’t catching eyes that much.
  • Natural – Well there you go, since you have all these weird spots, people tend to look at you longer as if your head is a Pollock piece, or maybe out of concern that you have cooties.
  • Modded Natural – Let your hair grow out naturally, but cut and shave parts to make your hair your own again. It’ll probably draw attention, but cause let’s face it, it may look a little crazy.
  • Hats – Cowboy hat maybe? I dislike hats. Never understood why it’s disrespectful to wear them indoors or when singing to your country of preference. Too complicated.
  • Wigs – I just may get some 80s hair metal wigs eventually.

After trying most these I’m going with a modded natural cut. I basically have played connect the dots between my bald regions. At first I used straight lines to connect them but I was looking at it and thinking, “hmm if I saw that out in public I’d walk in the opposite direction as that person seems to have a baaaaad symbol from WW2 on their head.” So I got things curved out.

new-hair-3-2

Hey Alex, just a reminder of 80s hair metal and a request I put in for you:

Mohawk V2

First some appropriate music to accompany this post. Some uplifting shoegazin’ metal.

Well I started losing some hair in my Mohawk, so I had to make some style modifications. I now have a bar towards the back of my head and a gap in the front. I’m being stubborn about this hair cut. I’ve noticed that I’m losing more and more hair as the days go by recently, but I’m going to keep as much of this going as possible until the last hair falls out. Theeennnn the fake hair may or may not be deployed. ^_^

It would look cool to have two pong paddles on either side of my head and have the ball go through that gap. I might do that one day this week for the techs to see.

It looks like I have a docking station for a space craft on the front of my head now ^_^

 

I started using a lint roller to keep track of how much hair I was losing at any given time. I compare the sheets each day to check on the rate of lose. I like doing this activity in front of Alex since it looks so silly.

Hey I can wear comfort clothes again!

After getting home from surgery I was quickly running out of comfortable clothes to wear. My work wardrobe was all I pretty much had. But hey no more tucking in shirts and being business casual. I can now wear whatever the hell I want to, so I thought about the most comfortable stuff I’ve worn through my life and that was my old (and ugly) skating clothes from when I was a little skater/punk/goth noob in my younger years.

So I decided to see what the skater kids were wearing these days by going to some skating shops….anddddddd things are much different and I’m old. So what if these teenage punk kids listening to No Doubt (really, is it cool to listen to them now???), pointed out that we had put a few years on us. All I cared about was getting some comfortable threads, shoes, and a chain wallet (which is out of style now and couldn’t be found). There were no more baggy pants (which is good), just super tight pants (which is ball busting bad). There are less skate board logos and more abstract hipstery t-shirt designs. The Van shoes however were still the same good ol’ and comfortable things I remembered. So I got some skater shorts, shoes, t-shirts, old school velcro wallet (soon to be fashioned with a chain from Lowes). The accessory that brings me the most joy is my official Chevy seat belt clothes belt. Such a satisfying click. My leather yoyo holder looks at home on my new pants as well which I’m happy about.

Comfort is key, and I found it.

Mohawk time

So they have the radiation machine zapping me from 4 different angles. I was pretty sure I could at least keep a mohawk, so instead of waiting for my hair to just fall on out Alex and I got my new hairdo cut. The nurses seemed to like it. Apparently this kind of mohawk is most like Mister T’s, which I’m more than happy with. They said if the rest of the hair falls out I can’t blame the radiologists, but I can go bitch at the chemo.