Sovereign Me

My name is Alex. I live on the West Coast, I spend most of my free time in front of computer screens or TVs, and I drink lots of caffeine. I've completed some college but never been to university, I consider myself a computer programmer but have never released anything worthwhile, and I own two guitars that I never play. I knit occasionally. I bring my smartphone with me when I go to the bathroom. I am 23 years old.

I have cancer.

As of the time I write this sentence, I'm getting married in roughly 18 hours. My fiancee, who I've already been calling my wife in private, is the strongest and most beautiful woman I've ever met. She broke me out of my shell and showed me there is life beyond my own self-doubt and the things everybody else wanted from me. She taught me a way to live on my terms and nobody else's. I've known her since high school, but only got to know her in my last year of college. In retrospect, the years before then seem wasted, pointless, inefficient.

I've leaned on her throughout this sickness.

I was diagnosed in October of 2018. I'd been sick for years before that; a cough that wouldn't go away, then fevers and hot flashes, then rashes and vomiting almost everything I ate. I visited specialist after specialist. I drank two liters of laxatives and underwent a lung biopsy. I lost 20 pounds. I've had cameras in every orifice. They only caught the lymphoma after I got a CAT scan for a kidney stone. God, I wish it had just been a kidney stone.

That night, I was summoned to a hospital in a big city. They gave me a port and I began my new life as a cancer patient.

A device something like this is implanted in my chest. Image credits at the end.

Once I started receiving chemotherapy, I felt better within a week. The rashes disappeared, the fevers stopped, and I was able to eat without puking my guts out--in fact, I was utterly starving for months after my discharge.

For a long time, I thought it would actually be that easy. Getting chemo every other week wasn't so bad, except for the wasted day. I went back to work after some months of leave. I got a credit card and used it to pay for some overdue dental work. I discovered a local Mexican chain that's one of my favorites now. Life settled back into routine for a short while.

At the hospital, it never seemed to be enough. The PET and CT scans continued to show "some activity." I went back to the big city for more chemotherapy that made my legs swell and finally caused my hair to fall out, down to my eyebrows and eyelashes. I had to take longer and longer absences from work, until it was announced that I would be receiving stem cell therapy in an even bigger city, even further from home. I would have to stay there for two months.

I got another implant just for this therapy.

Like this. Mine had three lumens, but was otherwise very similar.

I had to receive special shots to force my bones to make more stem cells, which were then collected via my brand new implant. Then, as I understand it, BEAM chemotherapy destroyed my immune system, and my own stem cells were used to rejuvenate it after the fact. I had to live in a hospital ward for a month, then stay in the city for another month so they could monitor me while my immunity returned.

The worst parts of it were:

1. Having to pee for the last three hours while my cells were collected
2.  Having to put tape and plastic over the catheter while I showered
3. Everything else during those months

I couldn't eat at restaurants. I had to wear face masks everywhere. My mom, who was my assigned caretaker while my immune system regenerated, hovered over me like I was a pot she expected to boil any minute now. If I was a degree too cold, if I answered a question in the wrong tone of voice, if I lay on my right side instead of my left, she would wonder aloud if I needed to go to back to the hospital or call the emergency line. Dear reader, you might think this endearing; imagine the same treatment 24 hours a day for 23 years.

However, I made it through and I'm home now. The catheter has been removed, although I still have the port. I have to wonder... what next? I still can't go back to work, according to the hospital papers. I can't make any plans with the specter of another possible months-long treatment regimen hanging over me. The only thing I can do is wait and fill time.

It's been agonizing not being able to go back to work, so in order to make work for myself I've decided to start a blog. A blog isn't like a novel or a video or a computer game; there is no defined end, and at some point in a blog's lifespan you lose sight of the beginning, too. I've kept journals on-and-off at various points in my life, and I've always secretly hoped that somebody unattached to the situation would read them. A blog will fill that desire quite nicely.

I've always been timid at heart. I've always gone with the flow and avoided rocking the boat. It's kept me calm in trying times, but it's also made me indecisive and slow to act on things that are important to me. Sovereign Me is not only the concept that I rule my own destiny, that my life is a kingdom and I am the king, but that the kingdom must be defended. My individuality, my passions, my right to be myself without the burden of anybody else's opinions; that is Sovereign Me.

Image Credits
Port image: By PanaromicTiger - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=6692890
Catheter image: By General Ludd - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=27359127