CAR T - 0

My latest scan did not have good news for me. I will not be returning to work December 1st, or any time in January, probably not even in February.

I still have the cancer. It's been vastly reduced, but it's still holding out in an area near the base of my spine. That black smudge on the scan is the worst thing I've ever seen. I do not get to return to work. I might not even have a job to return to once I'm done; I've used practically all my leave time.

My next treatment is CAR T cell therapy. My immune cells will be extracted, genetically modified and cultured in a lab, then sent back to be put back into my body. This is also the end of the road, as far as curing the cancer is concerned; if this doesn't work, all they can do is try to keep it in remission.

I feel like I'm wasting everybody's time. I got married--what if I never get better? What if I took almost a year off from work for no reason? I will probably never have a child for fear of leaving them without a father. What if I leave my new wife without a husband?

I have a few appointments in December, then in January I will have to stay in Portland for a month--another month away from my wife, away from home, in a gigantic city I don't care for to spend my days getting poked at the clinic and living in closer proximity to my mother than I ever wanted or imagined.

I hate not being able to work. I regret every time I ever complained about my lowly retail position. I have watched multiple seasons of TV in a single sitting and played more video games than I ever thought I'd be able to. I've read three new books and started (and scrapped) my own novel more times than I can count. I would trade it all away if I could just do some work.

Mom refuses to let me help with chores, drawing from a seemingly bottomless bag of excuses whenever I ask and getting mad if I just do them anyway. On the other hand, my wife's apartment is so cluttered, and her aunt so capable in mess-making, that I can only make small scratches on the surface before I'm exhausted for the day.

I know my wife means well, but a little bit of my heart goes away with every meal she pays for and every trinket she comes home with. All my life, the only thing I've wanted is to pay for dinner, to buy my own models and movies and games, to save money and pay credit card bills. Once I got a short taste of financial freedom, it was ripped away from me in one night at the hospital. I might as well have never grown into an adult--nothing changed, after all. Now I'm back to asking for instead of earning money, back to having everybody cart me around, back to special treatment and being pitied and talked down to instead of respected as a peer.

I wish I'd worked in some place I could avoid, like a restaurant or a fish-packing plant or something. Since I worked in the biggest grocery store in the city, there's no avoiding going in. There's no avoiding the pity, the "How have you been," having to tell them that no, I still can't return to work, I'll take care, thank you for the well-wishes.

I just want my life and my independence back. Having it and then having it taken away is worse than never having it at all.

A small update

Things have been difficult lately. It's getting down to the wire, financially. I've been scrambling like mad to find freelance work opportunities; transcribe audio here, fill out a survey there. That kind of thing.

My workouts are going okay. I went from 210lbs at my very heaviest down to a pretty stable 196. My health care network provides free gym membership for three months for cancer survivors, so I'm going to apply for that soon.

Things will get real if I can go back to work on December 1st. It's the earliest estimate for when I can return to work; however, my latest PET scan shows that I still have some cancer, and might need some more therapy. That eats up time.

I'm also working on something big: I'm developing a video game. Not a free browser game, not a random experiment or game jam entry; an actual, full-length game that I can put my name on and be proud of it. I've been working on it for five months, and it's shaping up nicely. Hopefully I can have a demonstration ready before January; but if not, that's okay, too.

If anybody's reading this, I ask only that you wish me luck. There's still room for it to get worse before it gets better.