My Life @splitskullfoundry - Tumblr Blog

Well, my scar looks better and I started Optune therapy at the end of January. I literally only take it off to shave my head and put new arrays on. It'll give me a few extra months, but the clock is ticking. I still have 8 more months of chemotherapy cycles but it's slowed as far as actually doing something. Never take time for granted. I gave up being mad at those who wronged me. And I apologize to anyone who I've done wrong too. I've made my peace.

#glioblastoma #cancer #brain cancer

Holllllly shit. This is rough. I'm not sure if it's the chemo specifically, or the radiation, or a combined effort from both. I'm on 10 different daily medications and 4 as needed meds for nausea and headaches. Trying to coordinate when I take them all was a pain. There's different interactions with each one. Some you have to have a after a meal, my chemo pills need to be taken on an empty stomach and an hour before radiation therapy, and some are just before bed.

Trying to find balance with my med schedule and sleep schedule is no joke. I'm also on a strict keto based diet to slow tumor growth progression. So far so good according to the scans I saw today. Hoping against hope that I can last a while longer. It's fucking wild to me that I didn't even know I had it until it was grade 4 and terminal.

#chemotherapy #brain cancer #cancer awareness #cancer #radiation #glioblastoma #fuck cancer

Update time for the few actually watching this. I had a follow up with the cancer center today, after receiving the report two days ago via email without knowing how to interpret it. I have Glioblastoma multiforme stage 4, which was the original diagnosis, instead of Oligodendroglioma stage 3. BUT it's actually better, weirdly enough. Glio and Oligo are more or less the same, but the Oligo has 1p and 19q chromosome deletion. This does not. Glio is the "scarier" form of cancer because of the overall mortality rate of 96% over two years, but because of the genes present I have a more favorable prognosis with glioblastoma than Oligodendroglioma. I have a super high concentration of an mgmt wild type gene. Wild type means there is no mutation present, and it responds better to chemo and radiation than Oligodendroglioma. My KI-67 was lower than expected as well. That's what determines overall tumor growth rate. He said of the 4% of patients that survive past 2 years, I have the highest possible chance of not only living beyond that, but actually beating it to some degree. I won't live to retirement age certainly, but there is some rare cases where people live 10-15 years. That wild type gene is essential to get through this. The cost of treatment is astronomical but debt means nothing if I can get through this and be there for my children. It's the best possible conditions for a not so good situation. I've learned alot of humility and grace through all of this and it's only been 5 weeks. I no longer hold grudges against anyone or anything. Reach out. Let each other know it's okay to not be okay. But most importantly, don't ignore any warning signs your body is trying to tell you about. Also the nurse loved my mask and couldn't keep a straight face. 😂

#brain cancer #cancer #cancer awareness #glioblastoma #stage 4 #chemobrain #chemotherapy #radiation

Decided I'm going to enjoy the time where I'm couped up and off of work during treatment. I won't be consistent, but flu season is approaching and there's a good chance I'll have to avoid my kids. 😂 Come watch me be an idiot at @splitskullfoundry on twitch.

48 staples in. 45 out. 😂 this shit is rough on the old sleep schedule. Taking it day by day.

Here's a recent development. I certainly have the time to post here now. I have Oligodendroglioma brain cancer. This is my journey. Not really through recovery, but until I inevitably kick the bucket. Could be 2 years, could be 10. It's truly hard to stay. I'll be going through chemo and radiation both simultaneously for about a year. During that time I'll be off work sporadically, depending on how my body reacts to treatment. I'm certainly afraid of the road ahead, but my mindset is unbreakable. I'll hold on as long as I can for my children. #fuckcancer