Cycle 2: Getting the hang of things
Five weeks into chemotherapy and I think I'm getting the hang of things. All the mystery and fears of cancer treatment have given way to experience and even some confidence. But I'm also staying humble and taking things one day at a time. Chemo shows little mercy. While I'm getting used to the side effects, any moment something new can just pop up. One moment I can be focused and feeling good and the next I can hardly keep my eyes open. Keeps me on my toes and listening to my body!
Each treatment has been better than the last. Familiarity goes a long way for that. But so does more drugs. The 'langer afbouwen' of my anti-nausea medicine (extension from a four- to six-day scheme) has done wonders to avoid a cold turkey dip day. My only other serious complaint that has persisted and worsened each cycle has been a relentless headache that Tylenol wouldn't touch. I brought it up to my hematologist before my third treatment last week. After asking a few questions to pinpoint the cause of the ache (nerves) she wrote me a prescription for two painkillers. Game changer. I can still feel the aches from my jaw and mouth, but they're not radiating pain through my head, they're just there. It's a very strange feeling but satisfying that it seems to be doing the job.
As I get more comfortable with the side effects and a better feel for energy and focus levels through each cycle, I'm also able to start doing more with my time. Not to say I was incapacitated through the first cycle - I took lots of walks, did chores, read a book - but my activities and train of thought didn't go much further than the present moment. Now in my second cycle, I am starting to develop more intrinsic motivation to do things. I filed my taxes, I've been practicing some songs on the guitar, I started an online course and have started thinking about some goals or things I want to develop in this period.
What I do find though is that my energy is very much limited. Even for something I'm enthusiastic about, I have maybe two hours worth of attention in me - and that's on a good day. I can see a nearly one-to-one ratio of energy in and energy out. The other day, I finally put in the time to finish my US taxes and I was so proud of myself but as soon as I finished, I hit a wall. I just had to recuperate as a vegetable on the couch until my battery was back up. The other day I got carried away cooking a big Indian dinner. I slept 14 hours that night. And now just today, I had to bike to the hospital to get my PICC line cleaned. It was a lovely bike ride in the sun and pretty pleasant to see the nurses and other patients at the hospital, but this simple task just wiped me out and I had to nap this afternoon. It's no chronic fatigue but it's far from my normal. I imagine it will only get worse as treatments go on but for now it's manageable and even satisfying to take this time for myself.
Beyond the nausea, aches, and fatigue, the other side effect that is increasingly catching up with me is hair loss *cue the Debbie Downer 'womp womp'*. The day that I thought to myself 'wow, maybe I won't actually lose my hair' was the day I took a bath and was constantly getting my hands tangled in webs of shedding hair. This was Wednesday, April 22: three weeks into chemotherapy. In the hopes that shorter hair would be less unpleasant to be falling out, Dane gave me a killer haircut the next day. It's still shoulder-length but it is more tolerable to manage falling out. Over the past couple weeks, each shower or bath I lose as much hair as what I used to lose in a month or two. It's not falling out by the handful and I don't wake up with clumps on my pillows, but pretty significant amounts shed each time I touch my hair. Two weeks on, it's becoming increasingly apparent. My hair's relatively thick but now it's falling a little flat, feeling lighter, and my part is more visible. Should it continue and/or accelerate, I'll buzz it off. More on that (and the associated feelings) at another time!
To close, here's a quick picture I snapped on my way home from the hospital today. It's an absolutely gorgeous day in Amsterdam. There are too many people soaking up the sun in the streets for my liking but I'm happy to still be healthy enough to bike and enjoy the springtime :-)
Each treatment has been better than the last. Familiarity goes a long way for that. But so does more drugs. The 'langer afbouwen' of my anti-nausea medicine (extension from a four- to six-day scheme) has done wonders to avoid a cold turkey dip day. My only other serious complaint that has persisted and worsened each cycle has been a relentless headache that Tylenol wouldn't touch. I brought it up to my hematologist before my third treatment last week. After asking a few questions to pinpoint the cause of the ache (nerves) she wrote me a prescription for two painkillers. Game changer. I can still feel the aches from my jaw and mouth, but they're not radiating pain through my head, they're just there. It's a very strange feeling but satisfying that it seems to be doing the job.
As I get more comfortable with the side effects and a better feel for energy and focus levels through each cycle, I'm also able to start doing more with my time. Not to say I was incapacitated through the first cycle - I took lots of walks, did chores, read a book - but my activities and train of thought didn't go much further than the present moment. Now in my second cycle, I am starting to develop more intrinsic motivation to do things. I filed my taxes, I've been practicing some songs on the guitar, I started an online course and have started thinking about some goals or things I want to develop in this period.
What I do find though is that my energy is very much limited. Even for something I'm enthusiastic about, I have maybe two hours worth of attention in me - and that's on a good day. I can see a nearly one-to-one ratio of energy in and energy out. The other day, I finally put in the time to finish my US taxes and I was so proud of myself but as soon as I finished, I hit a wall. I just had to recuperate as a vegetable on the couch until my battery was back up. The other day I got carried away cooking a big Indian dinner. I slept 14 hours that night. And now just today, I had to bike to the hospital to get my PICC line cleaned. It was a lovely bike ride in the sun and pretty pleasant to see the nurses and other patients at the hospital, but this simple task just wiped me out and I had to nap this afternoon. It's no chronic fatigue but it's far from my normal. I imagine it will only get worse as treatments go on but for now it's manageable and even satisfying to take this time for myself.
Beyond the nausea, aches, and fatigue, the other side effect that is increasingly catching up with me is hair loss *cue the Debbie Downer 'womp womp'*. The day that I thought to myself 'wow, maybe I won't actually lose my hair' was the day I took a bath and was constantly getting my hands tangled in webs of shedding hair. This was Wednesday, April 22: three weeks into chemotherapy. In the hopes that shorter hair would be less unpleasant to be falling out, Dane gave me a killer haircut the next day. It's still shoulder-length but it is more tolerable to manage falling out. Over the past couple weeks, each shower or bath I lose as much hair as what I used to lose in a month or two. It's not falling out by the handful and I don't wake up with clumps on my pillows, but pretty significant amounts shed each time I touch my hair. Two weeks on, it's becoming increasingly apparent. My hair's relatively thick but now it's falling a little flat, feeling lighter, and my part is more visible. Should it continue and/or accelerate, I'll buzz it off. More on that (and the associated feelings) at another time!
To close, here's a quick picture I snapped on my way home from the hospital today. It's an absolutely gorgeous day in Amsterdam. There are too many people soaking up the sun in the streets for my liking but I'm happy to still be healthy enough to bike and enjoy the springtime :-)
Thank you for taking us on this bumpy journey. I'm glad you share some insights, it helps us understand a little bit of what you're going through.
ReplyDelete