Brain tumors suck. Hi, I'm Patrick btw. This is my cancer blog. My "normal" stuff is over here.
“Hi, I’m Patrick and I have brain cancer.”
That is definitely not how I want to introduce myself normally. But in case of this website, I do. This post is meant to give you the high level overview of my story, and might be edited in the future to include links to posts I didn’t write yet.
But let’s start from the beginning, or to be precise, in February 2011:
I wake up (and luckily pass out rather quickly) from having a grand mal in the middle of the night. Yes, on Valentine’s day. Lucky me. My wife (girlfriend back then) calls an ambulance to get me to the hospital. Suddenly there are strange people in my appartment, asking for my name. Then they give me something so I can sleep.
The next day, I wake up at the University Hospital Aachen, Germany (where I live), faintly remembering that something went horribly wrong in the night. Without any clothes with me besides my PJ’s, I have to go to the MRI. They tell me something’s not quite right with my head (apart from the usual me being me).
I only remember bits and pieces of those and the next days, as I was heavily drugged to release the pressure on my poor brain etc. After the MRI I had my first appointment with the local brain surgeon, who told me there’s a tumor in my head that looks malicious and the best thing would be to do a craniotomy as soon as possible, to get as much of the tumor out as they can. Apparently, I agreed to let somebody poke inside my head with a sharp knife. One thing I do remember though: when my wife asked for the statistical survival rate, he just looked at us and told her: “Well, he’s not gonna live 50 years with this.” All she replied was: “Ok, we’ll make it 48 then.” That’s one of the reasons why I love her so much.
My first (and last for a long time I hope) craniotomy, with a resection of about 85-95% of the tumor. I wake up on the intensive care station with a tube in my lungs and a very weak right side of my body. That was to be expected though, as the doctor explained before. They had to go a little into the motor area on my left brain, but my right side of the brain is supposed to take over. However, I can already wriggle my toes and lift my arm (with great effort though), so I’m already confident that with time, I will learn to use my right side again as they promised. At some point, I get transferred to the “normal” ward with a pounding headache and a shaved head only where they cut the scalp. Yeah, it looked as weird as it sounds, but I really didn’t care, I was already looking like Frankenstein’s monster himself with the huge scar on my head, full of clamps holding everything together. The first diagnosis I get is that of a grade II tumor, as far as the surgeon could see it, but I of course have to wait for the results from the histology department.
Fast forward to the end end of my 10 day stay at the hospital: I walk out on my own feet without any help (though still shaky), a fact I was very proud of. The diagnosis I get discharged with says something about an oligoastrocytoma grade III. Apparently, some of the cells in the middle of the tumor were already showing a little bit more activity, so it was graded as III. I won’t go into detail of how I got the result in an envelope without any further explanation, that’s for another blog post. I never thought that me minoring in medicine would someday prove to be helpful. I also need to take something against the symptomatic epilepsy that stems from the fact that the surgery left scars in my brain tissue from now on.
Back to the hospital. Apparently, I don’t tolerate the self-dissolving thread they used for the subcutaneous sutures (wow, I sure do learn a lot of english medical terms writing this blog post) they used. So I need a second surgery (general anaesthesia again, the full works), where they remove everything and use normal stitches. A different story is waiting to be written here, about me not being allowed to eat or drink for almost 24 hours, because they couldn’t decide when to perform the surgery. Yes, I decided for myself to start drinking at some point, screw the surgery. Everything went fine on the next day though.
I have my first meeting with a neuro-oncologist in Aachen and quickly decide to get a second opinion in Heidelberg, where they have a major center for brain tumors. I never regretted that decision, I feel very well cared for there.
Now all I do is a regular checkup MRI (every 3 months) and I take Levetiracetam against the epilepsy. So I’m basically living a normal life, trying to live as much as possible in the time I have left (which nobody really knows how long it will be in the end). There is of course the everyday fear of something returning too soon, but that’s also for another blog post.
So this is it, the whirlwind tour of what happened to me. I will elaborate on one or the other part in the future, but this should be enough to tell you a little bit about me without boring you too much, I hope.