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 ūüôā

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

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 ‚ÄĒ¬†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

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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 ^_^

 

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!

End of Chemo / August Health Update

So for most GBM patients, they get a six month course of temozolomide chemotherapy. I was able to get a twelve month course, which as of now has officially ended. If you continue taking the meds you run the¬†risk of getting leukemia. Currently there aren’t any studies that show that continuing temozolomide will help. So right now I’m not interested in pushing it. It’s nice not feeling nauseous and as tired ^_^.

With the ending of chemo, I had to get a PET scan and an MRI sooner than I usually do. Unfortunately a new spot appeared in my MRI this week. ¬†It was in my resection cavity, and we’re hoping that it¬†is radiation necrosis. On one side, radiation necrosis tends to show itself within the twelve months following radiation treatment. I’m past twelve months so it makes me think cancer. On the other side, my PET scan didn’t show anything, so it makes me think radiation necrosis. So just like back in December I have no idea. I have to wait for another scan in four weeks to see if the spot is growing. This time I’m not as stressed for some reason. I kind of feel like I’m tired of getting stressed out.

So over the next four weeks we have to explore paths we can take if the spot is a new tumor. Basically we’ll be looking at different immunotherapy trials to see if we’re interested in any of them, and if I’ll be eligible.

On a non-medical note we finished watching Stranger Things recently on Netflix. Alex and I had such a great time watching that show. I especially loved the soundtrack and all the songs (generally 80s) that were played. One that I had long forgotten about, because at some point I got burned out on Moby, was his song “When It’s Cold I’d Like To Die”. I know it’s probably not the best song to attach to this post, but don’t worry I don’t want to die. I love the cold ^_^. I do want to relax and this song helps with that.

The Speed at Which We Get Test Results / June-July Health Update

Last week I had another one of my two month scans, and it came back looking as normal as the last one ^_^. July is also the last month of my 12 month chemo cycle, which I plan on doing a post about soon.


One medical planning challenge that Alex pushed to overcome was that the office who reads my scans started wanting scans done a week prior to us being able to hear about the results. It was punishment enough having to wait a day to hear about the results, so this just seemed outright mean to me. In my opinion high risk or terminal patients should be able to receive their test results within the same day. However there was another way of looking at it that my doctor explained which I respect as well.

In the case of my docs office their team gets together one day a week and reviews each other’s patient’s tough scans and come up with their¬†strategies, that way when a patient comes in getting stressful news the doctors have some ideas lined up on how to attack things. If they don’t have that time to review the scans with the rest of their team in advance, the patient can be left waiting around¬†a week not knowing what could be done to help them which in turn would¬†cause them stress.

So you can get stressed waiting to see if the scan is bad, or you can get a bad scan and be stressed waiting to see what the treatment may be. The choice on how to be notified should come down to what the patient wants in my opinion. It should not default to one.

Our doc was accommodating for us and will give us test results same day now. I personally can handle knowing I have a growing tumor in my head for a week while everyone (docs¬†&¬†family) start to strategize¬†. I’d want that extra time to think things through personally.


So anyways, good scans always bring good moods around these parts. Here’s a video my friend Andrew introduced to me, with music from an artist I’m a fan of. I can’t dance worth anything¬†but this makes me want to.

Major Lazer – Light it Up (feat: Nyla & Fuse ODG)

Feb-May Health Update

As usual it’s been a while since I last posted (longer than usual this time), and the site had some technical problems which are now taken care of, but I’m back for a post ^_^.

The scans that I’ve received so far this year have not shown any new tumor growth. I’m still taking my chemo treatment monthly which continues to add tiredness and nausea to the schedule, but I’m thankful that it’s there to help me fight the GBM. I continue to have pain around the surgical area which I recently discussed with my doctor since I figured it would have dissipated by now. He said that because of the nerve damage and the cut in the skull, I’ll have to deal with the pain indefinitely. Apparently it’s not something my body will fix. One thing I just started that is helping though, is taking a steroid that is taken as needed. It helps reduce the swelling nicely so far.

So I’m still kicking and enjoying each day I’m blessed to have.