One Very Bad Week

The previous post was written in the evening of May 11, when I had already had a couple pretty bad days with chemo side-effects. At that point, I guess I was thinking that I might have 3-4 bad days and then start feeling better again. The reality of the situation is that I felt like shit from the evening of Thursday, May 9 through at least the end of Wednesday, May 15. During that time, we made a list of all the trouble I was having...

• fatigue (much more than what I've now gotten used to)
• overall, flu-like body discomfort
• muscle weakness but also weird muscle spasms
• restless leg syndrome
• peripheral neuropathy (extreme tingling of fingers and hands, seeming to increase in intensity each day)
• lips and nose tingling, like an allergic reaction
• extreme mouth dryness and sensitivity
• dry and itchy nose, sneezing, sometimes runny nose
  
• headaches, much worse than I normally get
• rash on forehead, scalp, and neck

In addition, my peptic ulcer has flared up again, likely from the stress of all this. 

On Wednesday, when I got up, I thought I might be feeling well enough to take a shower. (I've only managed to have the energy for one every couple days.) I suffered my usual energy drop at the end, coupled with more extreme neuropathy. Before I was able to dry off, I tried to get to the toilet to sit down. It didn’t help. I called out to my wife for help. Before she was able to get there, I ended up going down on the bathroom floor for fear of passing out. Neuropathy almost made my hands non-functional. Finally able to get up off the floor and dried (with a lot of help from my wife) after which the rest of the day was absolute shit. 

I'll need to find an alternative plan to keeping myself clean. Maybe washing my hair on separate occasions from the rest? Clearly, I do not have the stamina for a regular shower right now.

On Thursday, May 16, we had an appointment for some blood work at the UW Cancer Center in Beloit. A phone call to them on Wednesday about how bad things have been got us an appointment with my oncologist as well. I wasn't feeling too poorly that day but, unfortunately, something triggered my vasovagal response during the blood work. Once again, they thought it was much more and called the paramedics. It took a lot of convincing to get them to cancel that. I rode out the vasovagal response and eventually came back to “normal”. Unfortunately, the whole ordeal wiped me out for the rest of the day. No worse than my bad days, but not much better. 

Today is Friday, May 17. I don't think I would be having a terrible day today except for the fact that I didn't get much sleep last night. I just couldn't manage to get comfortable enough to fall asleep. So, not surprisingly, I'm really dragging today. I took a short nap in the afternoon, which had to help, but I still can't claim this one as a "good" day. Maybe tomorrow? ... Please?!

 

First Chemo Aftermath

By Thursday, I was starting to feel some of the effects of the chemo. I was much more tired and my mouth started feeling strange and sensitive. Things seemed to get worse as the day went on, although I had no idea what was about to hit me. 

Friday and Saturday, I felt incredibly uncomfortable all over. I'd liken it to flu symptoms but I don't think I've ever had a flu that made me feel like this! The mouth thing got weirder, so much so that it felt like there was something wrong with the muscles in there. I am trying to be careful not to allow my teeth to do any damage to my tongue and the inside of my lips. 

I was so very weak that I could not muster up the energy to shower on Friday. I just couldn't do it. Spent most of the day on the couch with maybe an hour or so on a lounge chair in the garden. Had to employ my wife's old cane to get anywhere, and even then it was very slow going. Put the cane to immediate use again on Saturday. Again spent about an hour in the garden but it's hard to claim that I enjoyed it. It was a nice change of scenery from the living room but I am literally uncomfortable in my own skin right now. Nothing I do or take seems to alleviate the discomfort. 

This is absolutely miserable.

With my wife's help, I managed to shower on Saturday. It felt like a full-body workout by the time I was done. Lots of huffing and puffing. Even the simplest shower tasks felt like I was working out. It feels good to have gotten clean again, though. The hot flashes continue, though, several times a day, and one was there for me as soon as I got back down from the shower. Nothing quite like breaking into a sweat right after you've showered, dried, and are "cooling off".

It's probably safe to say that this is what awaits me about 48 hours after each chemo infusion. What worries me is that it could even get worse. (How could it get worse?!) A nurse told me that even people who feel nothing at all in the days following a treatment will end up feeling pretty bad after their third infusion. Since this has hit me like a ton of bricks after the first infusion, I can't even imagine what kind of fresh hell waits for me in the days following my second or third infusion. 

When they talk about cancer patients "fighting for their lives" this has got to be a large part of what they mean. The last couple days have literally felt like I'm fighting to stay alive.

Chemotherapy, Part 1

Thankfully, the first session went without any setbacks. We arrived at the Cancer Center at 12:45 pm having already eaten a decent lunch and taken various and sundry pills and supplements with my oncology nurse's blessing. After a brief conversation (mostly about my anxiety with the process and its side-effects) she set up the IV and started some steroid medication "so my body wouldn't freak out" when the Docataxel eventually started. 

After that was given time to run through my veins, she started the Docataxel in the IV. She told me she was starting it very slowly and stayed there with us to make sure I wasn't having any adverse reactions. I'm grateful that there were none. Satisfied I was okay, she left us in the infusion room to tend to other patients. 60-90 minutes after that, my infusion was done, I was unhooked, and we were free to go. 

Interesting side note: It was rainy and stormy most of the day. At some point after I was all hooked up and stuff was coursing through my veins, my wife's phone got a severe weather warning notification. Then another one. Then we heard someone at the nurse's station listening to a National Weather Service warning and overheard the word "tornado". We looked at each other and wondered if we were going to be ushered into a basement or some windowless maintenance area of the Cancer Center due to an approaching tornado! 

Thankfully, nothing like that came to pass, and I was able to stay put and finish the treatment. 

So, all things considered, the day went pretty well. (Well, that is, for someone with Stage 4 cancer getting a chemotherapy infusion. Don't let any matter-of-fact reporting on this blog lead you to believe that such a nightmare scenario isn't pretty much always on my mind.) I felt pretty tired and somewhat achy after we got home but soon realized that, although I had taken a variety of supplements and pills before we left, I had NOT taken any ibuprofen or acetaminophen. Taking a few ibuprofen at that point seemed to help. At the end of the day (now) I'm not really feeling much differently than I was last night at this time. 

Warnings from both nurses and friends indicate that I might start to feel some of the effects of this chemo in 3 to 7 days. The list of possibilities there is long and ugly. I'll be looking (apprehensively) for changes in how I feel in the days to come. I'll try to document changes here on the blog without going into too much detail about physical issues, especially the gastronomical ones.

Also, starting tomorrow morning, I will begin taking the oral part of the treatment; a med to further decrease testosterone* and some prednisone to keep my body from "freaking out". There are bound to be changes in my body's reaction to that stuff, too. We'll see. 

*Another side note and I'll shut up. I'm already experiencing a half dozen or more hot flashes throughout the day and night (mostly day) from the testosterone-lowering injection that I got a month or so ago. I'm having one as I type. I can't imagine what it's going to be like after a second testosterone-lowering medication enters my system! Our daughter and a good friend who has gone through chemotherapy treatments already have both given me neck fans and, boy, am I making use of them!

Chemotherapy, Part 0

After several back-and-forth phone calls to the Beloit Cancer Center and a specialty pharmacy called CareMed, we're now lined up for my first chemotherapy treatment. I go in to the Cancer Center tomorrow for some "baseline" labs they wanted to before I start. This will also be the first time anyone tries to use my chemo port for anything, so it will essentially be a test to see if it works.

If it does, and everything else goes according to plan, I am scheduled to have my first chemotherapy treatment on Tuesday, May 7. I'm looking forward to the next major step in killing off this cancer, but I'm also anxious about going through some of the horror stories I've heard about chemotherapy. Covering possible side-effects with an oncology nurse this afternoon didn't ease my mind much, either. 

These names don't mean much to me (yet?) but here is my initial prescription: 

• Docetaxel (injection) - slows cancer growth
  
• Abiraterone acetate (tablets) - further lowers testosterone
  
• Prednisone (tablets) - a steroid which decreases inflammation and slows down an overactive immune system