I’m beginning to get used to my life being dictated by the chemo cycle. There are always unknowns, and each two week period between treatments has been a little different, but there has also been a level of consistency to hold on to. The first 4-5 days after each treatment are still a bit of a gamble. The day after is typically characterized by nausea, followed by the brain fog and fatigue that sets in around day three. But sometimes the side effects don’t set in when I expect them to — this time around, I felt pretty decent the next day but got hit with more extreme fatigue on days two and three.
When the brain fog and fatigue set in, that’s when the frustration sets in too. When all I can do was lay in bed and watch movies because I can’t make my brain focus enough to work and I am too exhausted to ride my bike, I get upset at myself that I can’t just make my brain function. I know I shouldn’t be, but that doesn’t make it any better. There’s also always some anxiety in the back of my mind that maybe this time it won’t go away. I keep waiting for things to get exponentially and suddenly worse. Though on day three after each treatment I will complain endlessly about how horrible it is, for the most part so far, I feel like I’ve gotten off easy. I have more energy overall and I’m riding my bike more than I thought I’d be able to at this point. I don’t have a number of the side effects that I’d read about or expected (hopefully I am not jinxing myself here). By day five or so after each treatment, I still seem to miraculously bounce back to some semblance of normal-feeling.
That’s not to say there haven’t been setbacks. After my first treatment, my white blood cell (WBC) count dropped so low that my second treatment was delayed a week. I didn’t find out until I was actually at the oncology office, sitting down for my pre-chemo check-in with the nurse practitioner. I had to call Evan to come back from the four hours of errands and activities he had planned for while I was at chemo, and as soon as I got into the car I burst into tears. I’m not entirely sure why — partially because I felt bad for ruining his plans (he obviously didn’t care), partially because it was just something else going wrong, partially because the 15-page packet on neutropenia (very low levels of a particular type of white blood cell) and the conversation with the nurse had me convinced that I was definitely going to almost die from an infection.
Another week passed and my WBC levels came back up, and my oncologist made the decision to neither give me a shot that would help keep them from dropping so low nor continue to delay treatment for low counts. No shot because it can interact with one of the chemo drugs I am on (Bleomycin) to increase the chances of lung damage (already a potential side effect of “the bleo”). We’d just push on through regardless, unless I did develop complications from the neutropenia. This is good — I don’t want to drag out treatment, and I am definitely all for not getting lung damage — but it means that I have to take even more precautions all the time. For instance, I’m not supposed to eat anything that isn’t cooked because it could have bacteria on it. I had a total meltdown when I realized I wasn’t going to be able to eat salad for months.
Then the day before my third treatment, while going over my side effects with the nurse during our check-in, I happened to mention that after I’d left my previous session, my chest had a weird reaction where it turned bright red. I normally get chest redness at times from a variety of things — drinking alcohol, being nervous, etc. — so I didn’t think a whole lot of it, but the nurses were concerned that it was a reaction from the chemo leaking out of my port into my skin. Some of the drugs can cause tissue damage if they get outside of the veins, so this was potentially a big deal. Thus ensued a rush to get me in to a radiologist to do a “port study” to make sure my port wasn’t malfunctioning, hopefully within the next 24 hours so that I could still keep my schedule on track. Luckily, they made it work, and all turned out to be fine with the port too. Another delay narrowly avoided.
It’s now been 48 days since I started chemo, and I feel like I’m starting to figure some things out. I know that going for a bike ride every morning is about the best thing I can do for myself most days, and I make it a point to prioritize that. An hour and a half or two is the sweet spot, giving me enough of a mental and physical boost without making me too tired to do it again the next day and leaving enough energy to fight cancer and regrow cells that the chemo is destroying. Riding in the morning means cooler temps and not needing to worry about sunscreen as much, as well as a better head space for the rest of the day. I feel like I have more energy in the morning too. It’s my favorite time of day. It can be hard to get out the door, but I know how essential those rides are for my physical and mental well-being. As long as I’m not too fatigued, they are non-negotiable, and having that routine has been immensely grounding through this experience.
Since I’m not able to do some of the bigger, longer, exploratory rides that I crave, I’ve been trying to keep my 20-mile rides from home interesting. I have my standard go-tos, but I’ve been trying to mix it up and put together some loops I don’t do as often, or ride roads the opposite direction as usual. Figuring out ways to still explore has been exciting and satisfying, and something to look forward to each day.
I’m figuring out my diet, which was a bit of a struggle at first, especially with the extra neutropenia precautions. In addition to needing to think about the list of foods I can’t eat (or can’t eat certain ways), I also want to make sure more than ever that I am giving my body all the nutrients it needs to deal with cancer and chemo. I was struggling with a lot of GI issues earlier in treatment, which seem to have resolved quite a bit, perhaps as I’ve figured out dietary things that work. I’m getting better and better at making all my meals as nutritious as possible, and that feels good. It’s not like I didn’t eat healthy before, but I certainly had room for improvement, especially when life gets busy. I’m figuring out new dishes that I like and new ways to easily incorporate more different types of nutrients into each meal.
I’m getting better at not assuming that every bad experience or side effect that happen to other people who have gone through this will happen to me. Early on, after diagnosis and at the beginning of treatment, I spent a lot of time Googling things and reading through posts on a Facebook group that I had joined. I wanted to know what to expect, but the online rabbit hole typically is biased towards the worst-case scenarios. Just because it happened to someone else doesn’t mean it’s going to happen to me, and until it does, I shouldn’t spend too much time worrying about it. I’m successful at this a lot of the time, but definitely not all the time. I still go down the anxiety spiral sometimes, but for the most part I think I’m getting better at handling it and not thinking as much about the what ifs.
I got back on my mountain bike for the first time since early May, when I had my port placed and then a lymph node removed from my armpit (for biopsy purposes to confirm my diagnosis). For a while, as those incisions healed, I didn’t want to bounce around too much or risk crashing. Then I was all healed up, but I had gotten very “in my head” about riding rocks. Because of my heightened risk of infection, I got really scared of getting bloody and beat up if I were to crash.
But last weekend, Evan encouraged me to try riding our home trails with him and Shannon. I waffled about it, convinced myself I was not going to go with them, but then I did a complete 180 and decided that I absolutely was going to give it a try. I could always walk the harder rock gardens. There were points where I could bail out if it wasn’t feeling good. Sure, crashing on a mountain bike carries some risk but I’m a skilled rider and almost always clean everything on my local trails. I’d ride extra conservatively.
I’m so glad I did it. It felt amazing to be on a mountain bike again in the woods. Fears I had of feeling awkward since it had been a couple months since I’d ridden rocks were unfounded, and it gave me a boost of confidence to see that none of my skill had gone away in that time. I also was concerned about not having the power in my legs to get up short, steep, technical sections, but that wasn’t an issue either. It actually helped me get out of my head to climb trails and have something to focus on other than thinking about how slow I feel. Technical trail is inherently slow anyway, and being able to still clean tough rock gardens made me feel like I’m still strong. I ended up heading over to Coopers Gap for more the next day, and even made it up the entirety of a pretty steep trail (Bear Gap, for those in the know) without stopping, which I didn’t think I’d be able to do right now.
Now I’m looking at my fourth treatment tomorrow (Friday), which is hopefully the halfway mark. Next week I get another PET scan and we’ll reassess my treatment plan based on that. The hope is that the chemo is doing its job well and I’ll just need to finish out two more months of treatment to be sure the cancer is all gone. Since the side effects are supposed to be cumulative, I fully expect the second half to be tougher than the first, but at least if the scan looks good I’ll have a more concrete light at the end of the tunnel to look forward to.
8 Replies to “Finding rhythm.”
Great to hear how you’re doing, and I will continue to keep you in my prayers. Coopers Gap, eh? I should give it a try.
I love reading your stories Helena. You are an inspiration to anyone dealing with a life changing illness. You got this!!
You’re an inspiration!! Esrly morning ride coming up in the morning now. Lance Armstrong said, “You don’t beat cancer; you survive it.” You’re seeing how chemical but kills you! Praying for you.
You ought to publish these columns in a pamphlet.
*chemo all but kills……
So glad you are still getting out to ride and do the things you love!
You are truly inspiring. My wife had an extremely rare form of cancer. She searched the Internet and could only find disturbing articles and research. It drove her, and me, crazy. She’s still cancer free after ten years (knock wood).
As for diet, I know you pride yourself on being healthy but a little treat (ice cream?) in moderation now and then might help.
So glad to hear your wife is still cancer free! Heh, I know, I do treat myself every now and then, don’t worry.
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