Family Visits and Memories

Hi folks! Things have gotten a little scary lately. I’ve been having more seizures. My wife, Alex, is helping me with this blog post.

Last week I had a few more intense seizures than I’ve had before. I came close to losing consciousness and felt very strange, like I couldn’t stop remembering names of lots of people I didn’t know. It reminded me of the first seizure I ever had, which was what sent me to the ER and led to my diagnosis. My doctors have had to give me a lot of medicine to prevent seizures from happening.

After a seizure on Friday, my head hurt a LOT and I got very nauseous. I went to the Haven Hospice inpatient care center for a night, and it was nice, but it wasn’t home. Belmont visited me, but she started barking at my nurse, so she had to go home again. We were all surprised because she usually loves people.

Belmont cooperated for about five minutes.

Some good things have happened recently, though. Alex and I celebrated the ninth anniversary since our first date on February 21. We got a head start on anniversary celebrations by going to a dance on Valentine’s Day. We participated in a group swing dance lesson, but I’m not sure anything stuck. We still had fun and got to get some nice new clothes.

Fresh duds! Love the heart lights.

Special Agent Cooper has been making me laugh a lot. He’s a great dog. I’m really glad we got him.

Silly dawg, good buddy ^_^

My family has been staying with me since Saturday. My parents, Alex’s parents, my sister and her husband, and Alex’s brother are staying at the house as much as they can. My hospice nurse let us know that the changes happening to me right now mean that the end is approaching, and I understand what’s happening. I can tell that I feel strange, and I sleep a lot. Everyone is helping me get food I like (Leonardo’s pizza!), playing board games with me, and watching videos together. Last night we had a huge family dinner and shared a lot of memories about funny things like when Alex’s dad lit the roof of their shed on fire and every single neighbor called the fire department. Our parents talked about how they met. Justin liked the stories about things catching on fire.

I’m enjoying my time with family and my dogs. My cousin, Carson, is visiting with me today. His son drew me an awesome picture of BB-8 from Star Wars because I gave him a BB-8 toy last time they visited. I really like giving him gifts. My dad often plays with the toys I get for Carson’s son, and I have to tell him not to break them.

I catch a quick nap while Carson catches up with the dogs.

Another good thing has been happening lately. Lots of back and foot rubs 🙂

Mom is great at foot rubs, and dad can get a vice grip on my shoulders.

Nov/Dec Health Update

Starting around Nov I was beginning to have small seizure like symptoms again. I got an MRI earlier than planned. It showed that I have two new tumors. They came back so quick after my second surgery. Surgery wasn’t an option. If it was it’s not one I’d take since I’m still recovering some from surgery in late Sep.

There were a few chemo paths I could take, but due to the small likelihood of them actually helping, and also because of the extra rough side effects, I chose the supportive care route. 

I am a patient again with a hospice service and  am still going to the docs to help with seizure and pain issues. I’m not giving up, I’m living day to day to enjoy the time I have left on this planet. I’m having a wonderful time being alive with my family, friends, and super dawg buds. It feels wonderful not being scared and being around loved ones. I would love being around all these people and dogs muuucccccchhhhh longer but we all must come to terms with our last days.

Music from October 2016

Here’s my selections for October. I know I placed a track from an old Crystal Castles album on last month’s mix, but I came across their new album in October and really enjoyed it. There are some more 80’s tracks that I love to hear included as well. The radio in the last MRI reminded me of “Eyes Without A Face” by Billy Idol.

  1. Kyle Dixon & Michael Stein – Stranger Things
  2. Crystal Castles – Char
  3. Bomba EstĂ©reo – Pure Love
  4. The Clash – Should I Stay or Should I Go
  5. Joyce Manor – This Song Is A Mess But So Am I
  6. Generation X – Dancing With Myself
  7. Cass McCombs – Opposite House
  8. Billy Idol – Eyes Without A Face
  9. The Cure – Close to Me
  10. Cass McCombs – Medusa’s Outhouse
  11. Crystal Castles – Their Kindness is Charade
  12. Emma Ruth Rundle – Marked for Death

Download the tunes


Some music videos from the mix:

Bomba EstĂ©reo – Pure Love

Cass McCombs – Opposite House (strange video)

The Clash – Should I Stay or Should I Go Now

Music from September 2016

Hey everyone, here’s my selections from September which are finally getting put up in November. This mix contains a variety of songs that I’ve enjoyed a lot over the last few years. I’d say this is slightly on the moody side which I always prefer ^_^

  1. John Maus – Streetlight
  2. Foster the People – Coming of Age
  3. Small Black – No One Wants It to Happen to You
  4. Black Marble – A Great Design
  5. Crystal Castles – Vietnam
  6. Fever Ray – Stranger Than Kindness
  7. Lee Hazlewood – My Autumn’s Done Come
  8. Doves – Snowden
  9. Black Marble – Safe Minds
  10. Small Black – No Stranger
  11. BSN Posse – Horses & Crosses
  12. Suzanne Ciani – Malibuzios

Download the tunes


Some music videos from the mix:

Foster the People – Coming of Age

Black Marble – Safe Minds (unofficial)

Small Black – No One Wants It to Happen to You

Music from August 2016

Hey everyone, here’s my selections from August which I’m finally publishing in November. For August I focused on a few genres that I feel influence each other. These genres include Chill Out, New Age, and Chillwave. This is a lighter more relaxing mix (with some cheese) if that’s what you’d like.

  1. Boards of Canada – Dayvan Cowboy
  2. Washed Out – Feel it All Around
  3. Michael Hedges – Aerial Boundaries
  4. Enya – Caribbean Blue
  5. Bent – An Ordinary Day
  6. Enigma – The Child in Us
  7. Zero 7 – In the Waiting Line
  8. Air – All I Need
  9. Panda Bear – I’m Not
  10. Peter Gabriel – Mercy Street
  11. The Gentle People – Emotion Heater
  12. Enigma – Shadows in Silence

Download the tunes


Some music videos from the mix:

Boards of Canada – Dayvan Cowboy

Peter Gabriel – Mercy Street (Slow Start)

Music from July 2016

Hey everyone, here’s my selections from July. Sorry for the delay and posting this in October. I still need to post August and September!

  1. Lindström – Closing Shot
  2. Major Lazer – Light it Up [Remix] (Feat. Nyla & Fuse ODG)
  3. Todd Terje – Inspector Norse
  4. College – Fantasy Park [Moulinex Remix]
  5. Blood Orange – E.V.P.
  6. Nite-Funk – Let Me Be Me
  7. The Graves – R.V. Love
  8. Blood Orange – Hadron Collider (Feat Nelly Furtado)
  9. Abra – Crybaby

Download the tunes


Some music videos from the mix:

Todd Terje – Inspector Norse

This song came out a few years ago, but I haven’t stopped listening to it. Still my favorite from Mr. Terje. The video edits down the length of the song and shows the melancholy life of a 27 housebound man who is caring for his father and who is dealing with some internal struggles. Sad but good video. I like the way this guy dances, and is probably to closest thing to how it looks to see my white ass dance.

Blood Orange – Hadron Collider (Live)

Post surgery craziness

Soon after my surgery, things started to go really bad for me. The craziness extended out a couple weeks due to delayed communication from my doc. My pain level began increasing greatly, but when I reported it it, I didn’t get an appointment — just advice to take Tylenol. The pain continued. As the pain got worse and other symptoms cropped up, we tried to get help and seen by the doc, but they just kept telling us to go to the ER. I feel like I wouldn’t have ended up in the ER if my doc had taken me seriously and seen me earlier.

During this time Haven Hospice nurses were being proactive and coming out to our place to help manage the pain as well as keeping an eye on me. I began using wrong words (expected for problems in the area of my brain that had the surgery), as well as not remembering memories. Apparently I even forgot about what a bathroom was and tried to pee in the closet.

My pain and other symptoms got so bad that I ended up in the ER and was admitted to the hospital. I was barely there mentally during the first part of my hospital visit. An MRI showed that I had really bad brain swelling at the surgical site, and I was really lucky and had pneumonia, too. Due to the swelling I was having symptoms kind of like I’ll get when the cancer grows back in that part of my brain. It was initially terrifying to me because I was being asked basic questions like “What year was it?” and “Where are you right now?” and I couldn’t answer. Even though I was having cognitive issues, I was aware that I couldn’t answer and saw the looks on the nurses’ faces. I felt like my disorientation would mean I’d have no say over how I’d be treated. I felt like an object. The people who gave me initial care in the hospital seemed to ignore me like I wasn’t aware. I felt like they didn’t take into consideration my pain when they’d move me around and stuff. It’s a big leap to conclude that just because I couldn’t answer certain questions meant I was unaware of what was happening and what people were saying.

Eventually when I was able to communicate better and had some great nurses, the hospital experience became less scary. One of my favorite docs made his way to visit and really pushed the release schedule forward, which I appreciated greatly. He also came up with a plan for helping keep me out of the ER in similar situations in the future. I was eventually moved out of ICU to a level where dogs are allowed to visit. I was super happy about this. Our dog Wicket got brave enough to visit me and I was much happier. Within an hour or two of his arrival I was let out of the hospital.

Wicket may have been more scared of the hospital than me, poor guy.

Wicket may have been more scared of the hospital than me, poor guy.

 

After arriving home I was feeling pretty scared of the hospital, and of how the swelling messed with me. It took me a few days to get over being afraid. I’m hoping for a loooooonnnnngggg break from the ER and hospital ^_^.

Surgery Two Complete

img_1578

Me in the surgery ready room.

 

So my very recent surgery to remove two new tumors was successfully completed. The tumors grew in almost the same exact place as the original one did last year. The surgeons were able to cut through my existing scar and also use my existing craniotomy location; they just unscrewed the plate and then put it back when they were finished. After waking up I was notified that the tumors have been removed and had good margins. The results of this surgery may not be as successful as the first one because I am no long able to go through radiation and chemotherapy. A body can only take so much.

Recovery from this surgery should take an average of 4-6 weeks. I’m hoping for quick pain reduction and an easier time rehabilitating my jaw muscles. The docs had to cut through my jaw muscles again, but they were atrophied as a result of the first surgery, so I might not have to struggle so much with that aspect this time around. So I might be able to eat sandwiches again soon!

I am happy to know that two more tumors are gone. I am trying to think positive, but I’ve already exhausted a lot of the treatment options available for glioblastoma. The next step is to use the Optune device I wrote about in an earlier blog post. It’s a helmet that emits an electrical field that slows tumor cell growth. I opted not to enroll in a clinical trial because of the risk of uncomfortable or painful side effects. I’m trying to make sure my quality of life is good. Since the benefits of this surgery may be limited, and since the recovery is painful and long, I may decide to skip surgery next time.

Surgery Two Scar

How my head looks after the docs cut in to my skull to grab two more tumors. Hopefully this won’t look so ugly soon ^_^

 

My Album Release: Grade 4

So I’ve worked on some tracks and I’ve finally decided that the album will max at a total of three. I currently have it accessible on Bandcamp, but am looking to find a record label that may be interested in distribution. Here is the album cover and here’s where you can check it out. Keep in mind this is experimental for my friends and family that aren’t used to such.

lk_cover

Braaaiinnn Surgery Time #2

I’ve been having a lot of pain and health issues over the last month or so. With more scans and more docs looking at my scans, they now feel like I should have surgery to remove the two spots that have appeared on my scans. They think these spots are more likely recurrent cancer than radiation necrosis.

At this point I was very hopeful to join an immunotherapy study as I felt it would be the best bet to extending my life. The one I wanted to join wouldn’t take me, and the one remaining that I could join was phase one and randomized, i.e. not guaranteed to be safe or effective, and I might not even receive the treatment if I was randomized to the “standard of care arm” of the study.

So I’m going in for a traditional resection, same as the first brain surgery I had. The spots are roughly in the same area, so they will be cutting along my scar but with a little more cut to make the necessary reach. They will have to again cut my jaw muscle which is what I’m most unhappy with because it took so long to get my jaw to open wide enough to eat properly last time. Back to sub smashing ^_^

With each surgery they always talk about the risks. This one isn’t too risky and I’m choosing not to obsess about that. What happens is what happens. If God thinks it’s my time to stay or go I’m fine with whichever.

With my recent problems which include seizure like activity I am unable to drive again and am stuck at the house and reliant on family and friends for transport. I have prepared for post surgery recovery by getting an obscene amount of board and video games to nerd out on. Looking forward to having some fun!