How things could go

Pre-reading warning: This isn’t the happiest post you’ll find on this blog, but don’t worry there will be a good video at the end that should make you smile especially if you’re a Jean Claude Van Damme (JCVD for short) fan.

I finally was able to meet with a neurologist this week. Apparently I should have been going to see one since my surgery, but since I didn’t pick up their appointment call (umm I was drugged and sleeping after surgery) they didn’t bother with another call nor did one of my regular docs tell me I should be seeing one until last week. I could bitch about many scheduling and patient care issues I’ve had (been trying to focus only on the positive), but I’ll end that here for the moment.

All that being said the meeting with the neurologist was for me one of the most helpful and informative meetings with a doctor I’ve had since all this began. You think when being diagnosed with a terminal illness the docs would give you more information than just an estimate on how long you have left to live. I’ve spent the last couple months trying to figure out, and to be honest scared shitless, about what would happen to me as I got closer to death. I’ve not been scared of actually dying (a lot of other emotions about it, but not scared), but I have been scared about the cancer growing back in my brain and what it might do to me while I’m alive. Would it change my personality, would I become angry and aggressive, would I go blind, would I forget about the ones I love? The list of such questions has been growing and growing and driving me nuts.

So what I was told is that the area of the brain where that piece of shit tumor will most likely re-emerge will mainly affect my short term memory, ability to use correct words/phrases, and it will make me more tired. He said that for most people who have the tumor in a state where it can’t be surgically removed, or if the patient doesn’t want another surgery, they keep sleeping more and more, and generally pass away in their sleep. I know that sounds depressing, but for me hearing that I felt a ton of weight lifted off my shoulders. Having someone tell you you most likely won’t suffer some terrible pain from death is to me a welcome thing to hear.

Friends and family have been hoping that the cancer takes its time to come back, long enough for some kind of cure for it to come out. I’m wishful for that as well, but it’s not something I can be blindly hopeful about and not deal with what has a higher chance of actually happening. I’m not giving up, but I am preparing for best and worst case scenarios.

Okay, so here’s JCVD dancing to a good tune. Close the annoying ads.

Chemo and Radiation are now complete

Don’t know why I find this song fitting for this post but I do. Hope you guys can enjoy the random tunes that are showing up on the blog.

I had been looking forward to being through with all the chemo and radiation and am glad it’s all complete now. However I’ll miss the great radiation techs that I’ve seen the last M-F’s for the last six weeks. They were so fast and efficient at their jobs due to how many patients they have to treat, but that didn’t keep them from being such kind and supportive folks. I’ll miss seeing them, but I’m glad to be done.

Having sat in the waiting room all those days for radiation, I met a few people who seemed outwardly positive about their treatment, but most needing treatment were old, had a hard time moving, and a lot seemed to a hard time even talking…it was just super rough for them. One of my favorite patients who I would see sometimes before or after my appointment was an elderly man who couldn’t talk but would do a hand motion over his head showing that he really liked my mohawk as he walked past me. I always felt better after seeing him. He did that hand motion everytime I saw him. The last time I saw him we both gave each other a firm hand shake and a pat on the back.

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The M-F procedure – pills, then zap zap. Sa-Su just the pills.

 

In the Davis Center they made a bell out of a scuba tank, which each patient who finished up treatment goes out and bangs. The sonic quality of it isn’t something that would put you to sleep at night, but it’s loud enough that everyone in the waiting room of the first floor can hear it. Some days when you hear a bang people give an applause. There was one day were there was so much banging and applause, I swore it must have been a small kid having a great time getting rid of energy and being praised for it.

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The thing got hammered per the tech’s request

 

So after hitting the bell we headed home. Originally we were thinking about a trip to Costa Rica soon after all this ended, but the feelings of sickness got us to change our minds. We’ve still got some travel plans but I need to glide through the post chemo/radiation sickness first.

 

Jaw Stretches

One thing about the brain surgery I had, was that they had to cut one of my jaw muscles to get in there. The way it’s healed back, I am unable to open my mouth as wide as the normal person. They did the measurements and technically I have a reduction in my mouth opening by 50%. I finally got to meet with my surgeon this past week, and he gave approval for me to start on physical therapy, lifting again, and other physical activities. Apparently my jaw muscle was so ripped I probably had a stronger one than Arnold. He asked how my muscle was so strong, and I told him that unfortunately the stress makes the most inconvenient muscle in my body get super strong. Too much teeth grinding and clinching.

I get to start my physical therapy sessions soon which will involved someone sticking their fingers all up in my mouth and causing me to take those pain killers. For now I’ve been instructed to do some stretching exercises using tongue depressors. Every two days I add another tongue depressor to increase the stretch.

The biggest disadvantage of all this is I haven’t been able to eat any subs or larger sandwiches in the past couple months. Eating a sub is now the highlight of this work for me. Jimmy Johns, I’ll be visiting you soon.

Here’s an old school tune to help with the jaw stretchin’: Whodini – Big Mouth

End of the Carnival Ride

Radiation machine, with the custom holder for my head. This is the machine I’ve been visiting M-F for the last few weeks.

 

The song below is taken from a long comp (120 songs) which some electronic musicians donated their tracks to so that sales would go to Macmillan Cancer Support. I’ve found this album to be a good one to listen to when it’s hard to fall asleep at night.

Next week is my last week of chemo and radiation. I’ve been looking forward to this treatment being over, but now I’m having second thoughts about that. Right now while there are various reasons why going through chemo/radiation treatment sucks, at least I feel that something is actively attacking the cancer that wants to grow in my head. There is some security in the treatment I didn’t really recognize I was relying on until today.

Once the treatment stops, I feel like the personal treatment becomes about trying to stay as positive as possible and not imagining the cancer continuing to grow in my head. From what the docs say I think I’m supposed to understand and plan out that it’s only a matter of time, but I don’t know how healthy it is to think that way. There are some things I have to plan out and get finalized in legal docs and the like regarding my healthcare and how my physical material is distributed, but besides that I’d really like to find a way to not focus on the fact that the docs have said that this cancer is terminal and will eventually kill me.

One medical treatment that I will be going through the rest of my life is taking chemo meds for a week each month to help slow the growth of the tumor. I’m hoping that I’ll be able to rely on that treatment as a foundation for continued fighting.

Music Mix from June 2015

Most of you know that each month I try and put together a mix of tracks for friends and family. I try not to send out my mixes to folks who probably wouldn’t enjoy the selections. While not everyone will enjoy these mixes, I thought I’d go ahead and post them up just in case it’s something you might end up liking.

This month’s mix has more of a punk/alternative theme to it.

  1. Radioactivity – Sickness
  2. Champ – Burnt Alive
  3. Shine 2009 – Older
  4. Nisho – Over De Trees (Arovane Remix)
  5. Title Fight – Murder Your Memory
  6. Nothing – Somersault
  7. The Holydrug Couple – If I Could Find You (Eternity)
  8. Emil Rottmayer – Emil’s Theme
  9. SelloRekt/LA Dreams – Drop Top
  10. Citizen – Heaviside
  11. Nothing – B&E

Download the tunes