PROGRESS: Day 4.6

I took a break from riding on Sunday, but road today. Even though I felt okay when I woke up on Sunday, I had done a pretty hard ride on Saturday, so I felt like it would be a good idea to take a break and rest a bit. My watch said my Saturday exertion was pretty high and I had a lot of recovery hours after that activity. Today I completed a pretty easy ride this morning and then I got in some weight training this afternoon. It’s saying I have 8 hours of recovery left, so I should be rested for tomorrow and can get in another ride before my next treatment on Wednesday.

My side effects after treatment haven’t been bad this cycle either. The biggest pattern I can tell so far is that Thursday is my best day where I get the best night of sleep Wednesday into Thursday. On Thursday night I don’t sleep as well or as restfully because I can feel my heartbeat prominently. I always get hot flashes at night now. They aren’t too extreme, so I don’t tend to notice them during the day, but at night it they are more noticeable even if they are subtle. Either I wake up because the hot flash is about to happen or I wake up and then get a hot flash for one reason or another. Under normal circumstances, if I woke in the night I would drift back to sleep a few moments later. With the hot flashes, I get a hot sensation across my whole body and usually have to remove all of my covers for a few minutes before my body cools down. Once I’m cooled down, then I can cover back up and try to fall back asleep, but it’s usually harder and takes longer. For someone who rarely experienced any sleep difficulties, this really sucks!

On Fridays I feel a little more worn down and my heartbeat pounds in my chest a bit more noticeably. Friday is also when I start to feel more dry. My nose, skin, lips, throat and eyes (so pretty much everything you’d hope not to be dry) get very dry regardless of how much I drink. I’ve found that putting eye drops in at night helps to prevent my eyes from feeling too awful. For some reason, I think the dryness causes me to have congestion when I wake up or, at least, that’s the best way to describe it. Oddly, my entire body tends to feel fairly swollen like it’s holding onto water or something despite also being dry. So weird!

Saturdays and Sundays are pretty good, but a lot of activity just feels more draining than normal. I included a screenshot of my body battery, because I find it so interesting. Despite having gotten almost 9 hours of sleep last night, my body didn’t get to 100% “charge,” which it normally would have. After a very quick Google search, I found a paper from 2000 that looked at metastatic cancer patients who used Taxol and found that the high and low frequency ratio of their heart rate variability (what my watch uses to determine my body battery) decreased after two treatments. I won’t bore with the details, but they found that nighttime behavior of the parasympathetic nervous system was different and accounted for this shift. I don’t exactly know what it all means, but it probably aligns with the observations I am seeing with my own biometrics. I don’t really want to think too much about it, because it also suggests why patients develop cardiovascular issues as a result of treatment. I also hope it’s not permanent!

A less serious side effect, I have luckily avoided any horrible mouth ulcers this round, so that’s been more pleasant! The dryness usually starts to build and then I’m more likely to get random nosebleeds. When we were at the pool this weekend, my nose just started bleeding! Of course, I needed to get out of the pool and wait until it completely stopped before I could get back in.

Even though it doesn’t seem to help with the dryness, I have tried hard to stay very hydrated. I’ve made a habit of starting off the day with a 20 oz bottle of water with Skratch in it. They make these hydration mixes that taste really good and they aren’t as sugary tasting as Gatorade or other hydration mixes I’ve tried. I always drink that while I ride my bike and make sure I drink about 20 oz per hour while exercising. At the hospital, they set my IV drip to 500 mL per hour and that keeps me plenty hydrated!

I feel incredibly fortunate that treatment has been going this well. I know those around be expected it to be a lot harder. However, sometimes I think that because physically I don’t look all that different, people think it might not be that bad. Or I look normal enough so there’s no visual queue for them to treat me differently. While I don’t want anyone to treat me too terribly differently, this is still hard. It’s still scary to have these drugs infused into my body. It’s scary to know that I had cancer in my body and no one can know with certainty that there weren’t any stragglers (that’s what this adjuvant treatment is for). It’s worrisome to think about how much more hair am I going to lose. Every little weird twinge in my body freaks me out. The only thing I want anyone to take away from this is that while I might look pretty normal on the outside, this is still a huge challenge. I have to put a lot of energy into doing all of the things I do every day that I think will not only make my treatment go smoother but will also pay off in the long run. I am so thankful to my family who is not just supporting me through this, but enabling me to not deal with a lot of the normal, everyday responsibilities so that I can prioritize the things to keep my body strong and healthy.

Wednesday will be Treatment #5 (only 7 more to go!). I will meet with my oncologist on Wednesday, so I will be interested to get his perspective on how I’ve tolerated the treatment so far. I know he said in the beginning to be prepared – treatments 1-6 could go easily and then I could really start to feel it. But I will keep pressing on and hope for the best! I know I can do it, because of everyone’s love, support and prayers. Thank you!