CAR T - 8

This week has been draining, so this post is a bit late.

On Monday the 27th, I received my CAR T cells--the immune system cells that had been collected and genetically modified to destroy the cancer. Since then, they've been screening me non-stop for symptoms of neuropathy. They have me state the year, our location, my full name, identify three objects in the room and count down from 100 by tens. They also had me write a sentence before the treatment began, and every day since then I write the same sentence again on the same sheet of paper--checking my dexterity by comparing my handwriting.

I've been patient thus far--I've been in the hospital hundreds of times in the past year. I've been hospitalized for periods from less than a week to over a month. I've had three implants, dozens of medications, radiation, and more scans and X-rays than I can remember. Now I'm losing my patience.

It started on Wednesday, when I showed the doctor some bumps. I thought were probably acne, but wanted to check. He said they looked a lot like shingles. He got the opinion of some other people--this took half an hour. He wanted to biopsy the bumps--another half hour as, piece by piece, the biopsy equipment (read: needle, Q-tip, test tube) was delivered by a retinue of nurses. As a precaution, the doctor prescribed some stronger antibiotics. The insurance wouldn't cover them at first, so we waited another hour while alternative therapies were debated and discussed. The nurse went to lunch and came back somewhere in the middle of this. Someone assured us they would gather more information from somebody only for the nurse to come back and say that both of those people since left for the day. By the time we left, this short follow-up had taken well over six hours, most of which we spent waiting alone in the room.

When you have so little to look forward to in the day-to-day sense, this kind of time wasting takes a toll. I left the appointment fuming and cursing, and my mood hasn't improved much since then. They've even slowly walked back the shingles diagnosis, making it all even more frustrating. Today, they had four people ask me the exact same set of banal questions--do you have a cough, fever, aches and pains, rashes, so on. It doesn't take two assistants, a nurse and a doctor to ask these questions.

I prefer this to the times where I lost use of my leg or vomited several times a day, but only by a slim margin.

CAR T - 7

I'm back in Portland again. On Monday, I'll receive the modified CAR T cells. At least it's a very short infusion.



This hotel is very nice. It's got a swimming pool, a small gym, a bar/restaurant and complimentary breakfast every morning, none of which I can partake in due to various aspects of my treatment. The gym and pool are off-limits due to my brand-new PICC line, and a lowered immune system rules out restaurants, especially buffets, and doubly especially alcohol. No Fireball for me, sadly. Besides my PICC and lowered immunity, I can't be left alone; this therapy has a risk of stroke, seizures and neurotoxicity. Anywhere I go besides the clinic, Mom has to be with me.



I am so deadly tired. It’s hard to put into words how weary I feel. It’s fatigue that takes over your brain and leaves your body free to act like a zombie. I see and I do, but I barely comprehend anything. It’s a mode of existence where your thoughts tangle around each other in a web, your brain turning over like a car with a dead battery while the world outside moves in slow motion. I live moment to moment, and the moments peel away from me like pages blown in a soft breeze.



It’s just the nighttime after a long day. Tomorrow morning I’ll feel fine, and tomorrow night I’ll be cagey, defensive and depressed again.



My wife is home, waiting for me. That’s the only thing that is keeping me centered and grounded. There is one person above anybody else in the world that I live for, and she’s waiting patiently for me. There’s a light at the end of this tunnel, a dawn after the longest night in my life. We’ll laugh, we’ll hug, we’ll watch TV, we’ll go to restaurants and movies and long walks again. I just have to make it a bit farther.

CAR T - 6

Thursday was the first actual visit concerning CAR T therapy since my doctor and I initially discussed it. There's nothing really much to say. All I got from it is that it will involve yet more chemotherapy. The date looms ever larger; I leave on Monday.

It will be difficult. I'm going to be so lonely in Portland that I will feel like dying. I will miss my wife so badly that it will feel like my arms and legs are missing. Somehow, I have to keep the faith that this is temporary, that my life will return to normal at some point, that things aren't over yet.

All I truthfully want is an apartment with my wife, a car, and a steady job. I have to believe that I will get there eventually.

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.