Reasons To Be Cheerful, Parts 1-6

Not long ago, I wrote about trying to find happiness and joy in little things, and how that might be much harder to do when I'm in the throes of my worst days with chemo side-effects. To that end, I've tried to keep track of some things that make me happy even while at my worst... 

1.    I am continually so very grateful for my loving wife, who has taken on the role of caregiver in this situation. The things that she does for me every single day are too numerous to list, yet she continues to do those things without the slightest hint of frustration with me. Her care and concern for me is a love language, loud and clear.

2.    I'm grateful for my oncology nurses, who deal with this disease in people all week long and still manage to greet us with smiles and upbeat conversations every time we see them. I don't know how they do it. As you can imagine, their attitude is infectious.

3.    I'm grateful that my overall reactions, this round, were generally 10-15% better than they were during the first round. I feared they would be worse.

4.    Although I'm not grateful that most of my hair has fallen out, I am very pleasantly surprised at how much easier life is by not having to wash, dry, and comb a head of hair. I'm less happy about the loss of my beard hair but none of my beard hair is growing so I don't need to shave my face and neck. Another plus.

5.    I'm grateful I'm no longer oily! People warned of extremely dry skin when undergoing chemo. However, I have had particularly oily skin since puberty. Instead of the chemo giving me annoyingly dry skin (okay, a little bit on the arms and legs) the effect on me has simply been to dry up the oil my skin was producing. I feel cleaner, less sticky, and don't feel like I need to shower as often as I did before.

6.    I bought a new cane and I love it. I was using my wife's old aluminum cane which had flowers on it and a foam rubber hand grip. Once I realized how frequently I was going to be needing a cane in the next few months, I decided to buy myself a classy, handmade, oak cane. It's super comfortable in my hand, weighted just right, very stable, and looks classy. I love it so much that I want to use it even when I don't feel like I need it. 

 

Pain Relief Winner

One of the biggest problems I've been having with the worst days of the chemo side-effects is not being able to get comfortable enough to sleep. Soreness and joint pain seems almost amplified once that Docetaxel kicks in. The problem then snowballs because, if I don't get enough sleep, then I feel even worse the next day.

Alternating ibuprofen and acetaminophen seems to work pretty well when I'm not in the middle of the worst days, but the small amount of experience that I've had with all this so far tells me that even taking both together won't help me get comfortable enough to sleep. Back before the chemo started, I was prescribed some hydrocodone (5mg plus some acetaminophen) by my urologist. Unfortunately, it has never done much for the pain nor has it made me drowsy. I just gave up on it.

After losing significant sleep this round, we called our palliative care specialist to see if she knew of anything that would help. She prescribed some oxycodone (7mg plus about the same amount of acetaminophen) and I just started taking one before bed two nights ago. 

WHOOO BOY!! ... All codones are clearly not the same! This oxycodone kills the pain and puts me out like a tired little baby. I still have some minor sense of discomfort in some of the places that give me trouble, but the oxy masks it all very well. The last two nights, I've had the best sleep that I've had in weeks! Even when I have to get up to use the bathroom, I get back in bed and I'm out again like a light! Good stuff, I'm tellin' ya! 

I do know that this is also more addictive. I plan to be very careful of that. Honestly, though, I really only feel like I need this oxy (one pill a night) during the really bad days with chemo side effects when my joint and muscle pain/discomfort is at its worst. I think I can easily return to the over-the-counter solutions on my more "normal" days. 

I just had to post about this because I'm blown away at how different oxycodone is from hydrocodone. 

Is there a downside? The oxycodone gives me really bad cottonmouth during the day. I don't care for it, but it's a worthy trade for all the good it does me.

The More Things Stay the Same

I'm pleased to report that, although my reaction to the Docetaxel infusion did seem to start a day earlier than during the first round, I fared no worse during the last nine days. I am grateful for that.

Many of the side-effects that I suffered through in the first round came back to make me suffer through them again: extreme fatigue, extreme weakness, soreness from the waist down, body aches and discomfort, headaches, and stomach/intestinal issues. However, there were a few side-effects that gave me a break this round. I never got much of a rash on my face and scalp. Peripheral neuropathy (tingling sensation) was noticeable for a few days but not anywhere as bad as it got last time. The same can be said for the sensitivity inside my mouth and nose. Also, I had many fewer strange muscle spasms and restless leg syndrome. 

There's a part of me that wonders if this round was "better" than the first one because the sensations that I was feeling were no longer new and therefore no longer as scary. However, I really do believe that the intensity of many of the side-effects had decreased this time around. Maybe a combination of the two made this a slightly easier ride. 

That said, though, I still felt like death warmed over on the worst days. I wouldn't wish that feeling on my worst enemy. About 24 hours after infusion, I could tell my body had been poisoned. (Sorry, but that really is the best way to phrase it.) Starting about 48 hours after infusion, I felt like absolute crap. It lasted for 5-6 days after that. I'm writing this at the end of Round 2, Day 9 and today was honestly the first day I started to feel like myself again. 

What's new? I'm so glad you asked. I've encountered a new side-effect that is baffling me. You know that feeling you get in your body when you get the chills? That kind of tingly feeling that you feel inside your body when you get the chills? That's happening to me at the most random times! Sometimes I can just feel it in one leg and/or butt cheek but sometimes it's both. It's always below the waist, though. Also, lest you think that maybe it's happening because I simply get cold... we've had a heat wave for the past week, and this stuff can hit me in the middle of one of my now-fairly-regular hot flashes. 

That's got to be related to the other "nerve issues" I've had, like the weird muscle spasms and the restless leg syndrome. However, unlike those, this one strikes me as kind of humorous. I hope the experts don't eventually tell me that this is a very bad sign.

We're On Again (unfortunately?)

The second round of my chemotherapy started with an infusion of Docetaxel on the afternoon of Tuesday, June 11. 

I had no allergic reaction at any point that day. Using my documented reactions after the first round as my only precedent, I didn't really expect to be writing about any reactions until Thursday.

However, after I woke up today (Wednesday) I noticed that my legs felt weak. It really felt like I needed to use my hands to help lift up my legs to get socks on, for example. Stairs have become more difficult. In addition, as the day went on, I started noticing a now-familiar tingling(?) sensation in my mouth. 

All this tells me is that the Docetaxel is kicking in. I did not have a miserable day today, not by a long shot. Tomorrow is anyone's guess.

What I Did On My Chemo Vacation

My second chemotherapy infusion was originally scheduled for May 28. As I mentioned in a recent post, that was postponed until June 4 because my liver enzymes were too high. What I haven't written about is that my bloodwork kept showing elevated liver enzymes so it got postponed again until today, June 11. 

If there's any good reason I haven't updated this blog in the past two weeks it's that I've been feeling relatively well and the weather has been wonderful! 

During these precious (three in total) weeks of "vacation" from the side-effects of chemotherapy, I actually felt even better than I did prior to starting chemo. This looks like a sign that the other parts of my chemotherapy (especially the ones designed to decrease/block my testosterone that I take orally) are really doing their job right now.

When the weather has allowed, we've tried to be outside. We managed to catch up with several dear old friends out in our garden, for example. My wife and I have had picnics in local parks and have even managed a short walk here and there, and I even managed to get some more tree measuring done. That last bit involves flying my drone, something I haven't had the wherewithall to enjoy since winter. My wife has been thoroughly enjoying working in our gardens this spring, and I've been a beneficiary to all the wonderful life, color, and beauty she has brought to them. They're thriving!

I still don't think I have the energy to do any long hikes, bike rides, or kayak trips. You can bet your patootie, though, that I'm doing as much as I can handle right now. I'm even reasonably productive inside the house on the few rainy days we've had, something I really wasn't before or after the first round of chemo.

Not knowing that I was on my last day of this "chemo vacation" today, a dear old friend sent me this message: 

"Hoping that small things are making you feel some joy." 

Absolutely. That's right in line with what the late, great Warren Zevon said when David Letterman asked the dying Zevon if he had any advice: 

"Enjoy every sandwich." 

I have been trying to live by that since my diagnosis, but never more successfully than in the last three weeks. All good things must come to an end, though, right? 

My chemo infusion for today was not postponed and I just started the second round with an infusion of Docetaxel this afternoon. The real test of ones resolve for the quotes above happens when the going gets rough. I expect things should start to get rough for me on Thursday night or Friday. I hope I can still find some joy in small things when it kicks in. My friend's kind reminder to me couldn't have come at a better time.