CAR T - 5

Originally, this post was a lot more downtrodden. It was written and scheduled to be released, it was long and sad, and I wasn't going to touch it.

You can already read plenty about my sadness. It's all I've written about for five entries now. That's not the sum of my life, and it definitely wasn't true tonight.

Today got off to a rocky start. Mom and I fought some. I lost my temper when she muttered something that I thought was about me. I got my final radiation treatment, then we ate some awful overpriced Mexican food. I got lost in my own world, thinking about the weeks that I would be without my wife, thinking about how lonely I'll be in a big, unfamiliar city with only my mom and a dozen or so nursing assistants for company.

Tonight I was going to see my best friend. I planned to spill my guts to him, to let everything off my chest in one big ball all at once. But once I was in the car, I forgot why I was even upset.

We blasted music in the car. We hung out in the dopest comic and games store I've ever seen in my life. We talked about sex, booze, games and the Internet in the way that only best friends from college can. We had a push-up contest in his tiny bedroom. I did my first ever pull-up. We cussed, we chowed down on Taco Bell, we talked about our lives. I teased him about his crush on Taylor Swift, he teased me about liking metal music. Most importantly, we were just ourselves.

It reminded me that I'm young and still alive. These hospital trips and all this medicine and all these treatments are not the rest of my life. The love of my life is at home waiting for me, there are people out there who share my interests and my passion, and there's at least one guy out there who just gets me.

There's no reason to act like this is the end. I'm going to make it. I'm not alone.

CAR T - 4

Although the radiation (and generous use of oxycodone) has started to relieve my back pain, I'm still unhappy.

I don't want this blog to be a journal of my depression, because that's not what life's about. My life has been turned upside-down, but that doesn't cancel out the good times I had before or the good times that I know will come after. The hole that I'm in is just so deep right now that it's almost impossible for the light to reach me.

It's six in the morning. I get to go home for the weekend today, see my wife for about 24 hours before I have to turn around and come back for more therapy. All I can think about is the fact that I must leave her. That terrible stay coming up in January. Those weeks all alone again.

I've spent so much time living just for the sake of not being dead. Being with my love was supposed to be the beginning of a new kind of life, a self-determined life. I would make my own terms and be free.

I can't think of spending another month in some cold, gigantic city full of strangers, living in a tiny room with my mother. I don't know how I'll survive.

What if this isn't the end? What happens to me if this is just my life now?

CAR T - 3

This week was my first week of radiation therapy. With a combination of oxycodone and tramadol, I'm able to lie flat on the table long enough for them to do the treatment; it still hurts to lie flat on the table, but I can manage it. I can't believe that even with all these strong painkillers, I still hurt this much.

I'm so tired and unhappy. I don't find fun in anything anymore. It's a chore to even write these sentences. I don't feel like writing, or reading, or playing videogames or listening to music. I haven't worked on games programming in forever. Before my back started hurting and it became a moot point, I didn't even feel like exercise.

The emotional ups and downs have been just as hard as the physical ones. My entire life has been turned upside-down, and at this point it's still unclear if it will ever return to normal. The only way I've been able to make it by is to not think about it too deeply.

CAR T - 2

I've been suffering steadily increasing back pain for a while now. There was a tumor in my lower spine earlier this year; they treated it with chemotherapy and the pain went away, but it's back now. The doctors have agreed that the best way to treat it is radiation therapy, in the lull before I go to Portland for the long stay. Because of this, we're celebrating Christmas tomorrow.

I wasn't able to do my CT scan today; being on my back hurts the worst, and I couldn't lay still long enough for them to do the scan. They gave me a shot of morphine and tried it again. I made it through the scan the second time, but my back muscles were still on fire. Even blunted by morphine, the pain was excruciating. At least the nap afterwards was nice.

I'm upset. I had a few weeks left of normalcy before I had to go away; now those are gone. I won't be able to kiss my wife, play with my nieces and nephews, or talk to my older siblings for months at a time. In all actuality, it was rather naive of me to think that radiotherapy could be as simple as one visit; it still doesn't take the sting away.

CAR T - 1

As I write this, it's November 29th. In four days, I will go to Portland for the first appointment on the road to CAR T.

They will check my veins and discuss living arrangements. I might even get an actual timeframe, instead of guessing and dreading.

Now that the sadness has passed, all I feel is anger.

I'm angry that over a year of my life has been taken from me with no recourse.

I'm angry that I have to be away from my wife for an entire month.

I'm angry because I feel like people won't speak plainly to me. I'm angry because I'm broke and don't have my driver's license. I'm angry because people tell me not to be angry--dammit, don't I have a right to be angry? Everybody else overreacts to trivial things; why can't I be mad that my life has been endangered and every aspect of my growth has been completely derailed?

I wanted to study math and computer science in a big university; that was a pipe dream before I'd even started. I wanted to get an apartment with my wife; that only became more difficult the harder I worked at it. I wanted to excel at my stupid little retail job; obviously, I can't now. I wanted to have the dentist fix my teeth, and I can't. I wanted to earn money, and I can't. I wanted to begin my life, and now I can't.

And yet, I'm still expected to keep a stiff upper lip and not stress the small stuff. Even as obstacles and indignities beset me, each one washing away my resolve like a stream eroding a mountain, I have to hear the most stressful, high-strung people in my life tell me to "calm down."

When am I allowed to be upset?

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.