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?