Have I had several Jack and cokes? Yes.
Did I just pour myself a glass of wine that weighs a brick? Yes.
For you religious folk that have supported me thus far, thanks. You probably won’t like my language moving forward, and that’s too bad, but I just don’t fucking care anymore. It’s painfully obvious to me I have a limited time left on this earth and it’s simply not worth spending a minute being someone other than myself. And my real self likes to curse, a fucking lot, so it is what it is. Get past the semantics and help me on this journey or just stop reading.
So, why does this week suck? Let’s start a few weeks ago when I read through the details of my surgery, which I will post at some point, and found out that based on statistics, I have a 60% chance of living 10 more years.
Yeah. Fucking brutal. What would you do if you had 10 years to live? A somewhat fun hypothetical to play with friends, which is no longer hypothetical for me. 6 months to live, a year to live – no problem. Fucking travel, stay at home with my kids, spend 100% of my time with my family and friends. 10 years? Fuck me. Live life as normally as possible. Keep working, try to leave my family in a situation that doesn’t suck balls – meaning you don’t go crazy spending all your money because there are people left when you’re gone that will need it.
So 60% chance on 10 years, awesome. On top of that, 2 other shitty things have happened this week. 1, my insurance, LIFEWISE WASHINGTON, affiliated with PREMERA BLUE CROSS, has decided that the radiation therapy my genius doctor has recommended and approved is “experimental” and not covered by insurance. Seriously? If I was a pediatric case, under 18 years of age, it would be approved. But apparently being 33 with two young kids with brain cancer is basically a foot in the grave, so fuck me. And fuck you Lifewise. I’ve hired a lawyer and am entering the second phase of the appeal process. Yep, exactly how I envision spending my final moments. Fuckin-A.
2, I had a probe today. They stuck a camera up my right nostril, through my sinuses and down my throat. This is the third time this has happened. First time I had a couple of interns do it, it took them 3 tries and 3 nostrils before they made it down to my vocal cord. Second time I full on passed out. Luckily, Kelsey was there and caught my 1 day old brain surgery head from hitting the machine. The intern there was scolded for not acting more quickly. Although, to back him up a little bit, Kelsey really should have been a doctor. More lives would be saved if she had. 3rd time was a charm. Dr. Hillel is an absolute stud and had an amazing technique for going forward and backing out. There was a picture of him on the wall where he was examining a lion. I tried to focus on that and tried to not pass out, which seemed to help. Plus, he worked on a fucking lion – that’s pretty cool.
So, here I am. 10 years to live, on average, which is fucking bullshit. I have NEVER been average in my life and sure as fuck don’t plan on starting now. So I’m trying to not be phased by the whole “you probably have 10 years to live” thing. But numbers are what they are for a reason, and some of this bullshit will be completely out of my control.
Lifewise – seriously? Make the right decision. Proton therapy is not experimental. Interesting how black/white/simple the decision would be if the decision makers were personally affected. But most people don’t have brain cancer, and most people certainly don’t have the kind of fucked up cancer that I have.
And is it weird I feel a responsibility to fight for adults with ependymomas that will come after me and need the same radiation therapy? Because I can. Yes, I can afford a lawyer. The next sucker that gets an ependymoma may not. Don’t I owe it to him/her to help change this outdated policy? Just like all the people before me that had brain surgery and treatment for ependymomas went through all that shit so that I could get better treatment and a better outcome as a result of their experimentation. 20 years ago I’d be in a much worse place. I owe it to the people in the next 20 years to make it better.
I know I should probably be selfish and just think about me and my family, but it’s so much bigger than that to me. Of course my family is more important than anyone else, but there are plenty of families that are coming after me where this is going to matter. Collectively, this will mean more than just to me in my selfish view.