Personal updatePosted on
I think I'm allowed at least one personal message these days. There's no thread or solid reasoning in this. My mind is still mushy so there should be typo's, but it's the mind I have. 🎉 But to me it's all about gratitude and privilege.
How it started
So, first some steps back. To how it all started. I had brain surgery in 2002 and 2004. In 2002 they operated to remove a pilocytic astrocytoma. That's a benign grade 1 brain tumor, in my cerebellum, that somehow gave me no complaints. Another weird story, but they discovered it accidentally.
From 2002 and onwards I had checkup MRI's. There was still/again something visible in 2004, so they went in another time. The surgery gave me complaints till this day. By now I've learned that the official term I should use is non aqcuired briain injury. Aka, it didn't start out like this.
I've had issues with balance, nausea (lots of this), oversight, planning, energy... basically all the complaints you usually have before you find a tumor. It's why I'm used to working 3 days a week. But all this started in 2004. And I still have the MRI's.
The MRI's always felt like checkups. Something we crossed of a list. The last one felt just like that, except it wasn't. The previous one was 4 years ago, and there was something visible. Our expectance was clean results each time.
The MRI scan was on a Thursday. We spoke on Monday. They could not tell us anthing yet. At that point it could've been anything in my head. Including all kinds of cancer that you discuss as a state of a few years. Obviously, my head went racing after that. I'm born in 1984. I'm far too young to have a lifespan, or some clock ticking in my head. I have a 3 year old daughter and a wife. That night was terror.
The day after they had discussed the image. It was "most likely the same thing". Which means surgical removal, and no chemo, radiation or anything afterwards. Big difference, but still a weird rollercoaster. We expected nothing, and now it was "only brain surgery". Yes, people do think like that.
I was placed on a waiting list. I came in for admittance on a Tuesday. I would be called in around 11:30 in the morning, for surgery at 12:00. Except, there was no room in Intensive Care or Recovery afterwards. I was waiting for my wife to either get brain surgery, or be placed back on a weeks-long list. And we didnt know anything.
Fortunately (?) I ended up getting brain surgery. And this is where I'm never thankful enough. My wife was there first thing and she was there every day in the hospital. She cared for me, looked after my agenda, and I only had to focus on recovery (get moving!). I felt much better than last time and even had more jokes on the first evening than last time (valuable metric).
It's no been two weeks since surgery. I've had the amazing news that I once again have a stage 1 tumor. This means they removed everything, and I should be done now. I can't say that enough. I was so very lucky. Everybody there had worse complaints. All my issues feel like they'll be no issue in due time. I've got problems with my sight (including nystachms) but I don't mind a computer at 150%. My balance isn't there yet, but it's improving each day. I asumme a ton of typo's, but they get less and less. And I am actually typing this. I feel like the sharpest tool in the shed. Brain surgery is no joke, but it really feels like I had it easy. My wife took care of me. My daughter had family take care of her. The hospital was amazing. I've seen lots of talk about bay area salary, but I just got my head cut open, and I probably won't spend more than my deducitble. I even got to build LEGO sets as part of my recovery. I can take my time, and just pick up my life where I left it. I feel so very priviliged. I did spend at least one week extra in the hospital, because my wound kept leaking. I really really did not like that. I had to lay still and do nothing. Which was really hard when I already went home before that. But all I could think about was privilege. I had my wife. I had family. In the end, it felt like I didn't have to do much but be the best patient I could be.
So where is this post heading?
I guess this is a big thank you. To the hospital and staff, to my wife, to my family and to more priviliged position. I can return back to my life. Maybe even do more than before (I'd love to). I'm not sure what the most logical route is, but people can always donate. I was part of the Neuro Oncology Department D3 Oost. Not sure if they can be mentioned specifically. I'll see what I can do for the hospital and staff in the near future. If they take care of other people, like they took care of easy me, then they're doing amazing.
I'll be patiently rebuild whatever I had in the next weeks. My wife is amazing. And so is my daughter, who does not want to leave me alone. I feel rich with opportunities. I'm somewhere between Zen and Arrogant from having too much time on my hands. So I think I'll be able to do anything, and take any role or position in the near future. So if there's any bay area remote money, please do let me know. But I feel like I should be fine either way.
Please take care of people whenever you can. Health is not a given. All fundaments are temporary. Share when you can. I know I will. Let me know if there's anything I can do.
Again, I'm so thankful. I can walk away from all this. I can enjoy my daughter and family. I can rebuild a life, and keep contributing. It's never a given and I'm very lucky.
Got feedback? I bet you'd appreciate a group of accessibility experts. Share insights and grow together.Join Discord!