Life is a journey… | the ramblings and writings of a guy who prefers to write on paper, but can't live without the internet…

Day 38 – Use Your Words

“Like we tell Madison, use your words.” ~a dear friend


Chemo started 1 week ago today. I find it easy to think in military terms, like this is a battle or war. But because I know nothing about warfare tactics, chemo, or cancer, it feels like I would just be using adult words as a child would. So I will skip those comparisons as much as possible.

When we walked off the 8th floor elevator just after noon on Monday, September 24th, 2018, it finally became real. This feeling of becoming real has been occurring a lot recently. Each procedure, each doctor visit, each step leading us irrevocably closer to the actual treatment of the cancer inside my body. And for every one of these moments, shit gets more real. But this day, this day was even more real because it was the first day I would intentionally be allowing them to inject a poison into my body, where I was asking them to kill me to save me. I made it off the elevator, but half way down the corridor, I froze. I was paralyzed with emotions for a few seconds as tears slipped from the corner of my eyes. This was really about to happen, and I questioned if I had the ability to simply walk down the hallway.

Lino turned, asked if I was ok, and then just took my hand and helped me take each step until we were checked in.

The process of getting chemo is pretty boring for my treatments. I have a port installed which makes it super easy to safely (more safely, this is poison we are talking about) inject the drugs that I need. They just pop a needle in the skin into this port and bam, that’s all there is to it. Once they stick you, it’s just sitting waiting. For my treatment plan, once the initial infusion is complete, they send me home with a pump of additional drugs which are slowly metered out over the following 46-48 hours. It’s not too annoying and I was able to leave the house with it on when I needed to. It is weird though, having to sleep with something attached.

My brother arrived just after they started everything up at the clinic. He came back and sat there with me during my infusion. The first thing he did when he saw me was give me a tribal bracelet that is black and fierce, it reminds me to fight when I wear it, so it’s on basically any time I am awake.

They warned me about side effects. I should have been more prepared… On the way home I thought my tongue was swelling up, I had a headache, my nose was constantly running, everything tasted strange, my hands and feet started feeling strange, and I just wasn’t sure I felt quite right. Thankfully my tongue didn’t swell up because that’s the only side effect I was having that was an indicator of a bad reaction. But over the next few days, my body reacted clearly to the poison I had been given.

Now, this may be dark humor, but I have a chemo song. Brittney Spears’ “Toxic” It’s my rally song for chemo, I play it when I get home. It reminds me that for the next several days, I am literally toxic to those around me, my sweat and bodily fluids can pass on the chemo, so I have to flush twice, be careful if I sweat and generally try not to touch people/things.

The strange taste and tongue feeling weird were the first specific symptoms I noticed. Metal silverware tastes funky in my mouth, and the first bite of ANYTHING I put in my mouth makes my jaws feel like they got stabbed by a 9-volt battery. I had to buy plastic silverware, seriously I eat with kids silverware most of the time because metal tastes wrong. Thankfully the general strange taste and 9-volt bites of food went away the days after the pump was removed.

The next side effect is the neuropathy. It’s like a numbness or tingling in your extremities. So my hands and feet felt really strange for a few days. I have to use gloves to get anything out of the freezer or refrigerator or it causes some shocking pain and can actually do permanent damage to the nerves. It also means I can’t drink anything cold. So I have to schedule ice cream dates very specifically to be NOT when the neuropathy is bad or I’ll do myself damage. *sigh* Ice Cream could hurt me right now, that’s kinda’ funny and sad. Now there is some possibility that CBD oil in high quantities could act as a neuroprotectant, thus limiting the side effects of the neuropathy as well as reducing the long term impacts. I’m doing my research and am hoping that it helps. I’ve been off the pump since Wednesday and my fingers still feel strange.

One of the things they tell you is that you will learn how your body reacts to chemo and that you can use that to figure out when you will have energy and when you can reasonably accomplish things. So far, the first few days are ok, the steroid makes me a little jittery but I can deal. The nausea hits not long after that, this is harder to deal with. I have multiple anti-nausea medications that I take, most of which don’t really work. Thankfully I live in California, so I eat during chemo because I get stoned. Days 5-7 seem to be the worst so far, I was dead tired, slept most of the time, super nauseous and barely moving. But the past day or two have felt slightly better, I just need a comfortable piece of furniture to sit on.

My brother and sister were in town during the first few days, my friend Mark (brother from another mother) was here the last few days. I’ve been blessed to see these folks, and the friends who have stopped by to say hello. I’m not always up to visitors, some days I have lots of appointments, some days I have no energy. But please know that I probably would love it if you tried to stop by for a visit! I may not do much, might be a day of me napping, but friendship is important and so is human connection! Just remember to stay away if you have the sniffles, itches, rashes, sick kids, sick pets, sick roommates, sick parters, etc. No offense, but my immune system is taking a break, it should be rejoining us eventually.


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