Saturday is tired day. It's also update day.
I am 80% of the way through my radiation therapy. My regimen calls for 25 "fractions" of a total dose of 4500 centigrays of radiation to be given each weekday, and I have just finished day 20. Time for an update!
In my last post I mentioned how tired I am after radiotherapy. I wish could say that I'm getting used to radiotherapy - although trust me, I definitely don't want to get used to it! - but the truth is the exhaustion is, if anything, getting worse. I still feel perfectly fine and normal after my radiotherapy session, and for at least two hours after I still feel pretty good.
Then I feel like I'm swimming through oatmeal.
The tiredness doesn't come on all at once. It's not like I feel like I was hit by a truck or fell off a metaphorical cliff or anything, but over the space of less than fifteen minutes I go from pretty much perfectly normal to struggling to keep my eyes open.
Again, this is a weird sort of exhaustion. My brain is foggy, my eyes are heavy, my speech is slowed and my voice is soft and a little raspy - like I'm almost asleep. The only problem is that I am not sleepy, not even a little.
"Do you think having a nap would help?"
More than one person has asked me this. They ask it out of love and my heart is nurtured by the concern that motivates the question, but the fact is that I have never been one to nap so this is not something that even feels natural to me. I did try once this week, but I just lay there with my heavy eyes closed and my foggy brain still stubbornly staying awake. Half an hour I gave up and went back to my sedentary activities - reading, surfing the internet, and playing video games. I'm just not sleepy, and so I don't think that napping is going to help.
The exhaustion was noticeably worse this last Friday than it was the week before that, and that was worse than the week before it. Last Saturday was a write-off for me activity-wise, and although I woke up feeling well-rested at about 8:00 this morning by 8:10 I felt like I had been up for eighteen hours. I just have no energy - mental, physical, or emotional - to start any activity more strenuous than listening to music or going to the bathroom.
This is perfectly normal. I had an appointment with another new oncologist this week - that makes four involved in my care now - and mentioned being tired. "This protocol is a marathon, not a sprint," he told me. I've been told that by other members of my health care team; the metaphorical marathon here indicates that the toxicity of my regimen is spread out over a long period of time, rather than being grouped into brief but intense periods of toxicity. So it's not surprising that I am tired each afternoon and that the tiredness is getting more pronounced as time goes on - just like the exhaustion of a marathon runner as they pass the halfway point and continue the slow, steady grind to the finish line.
I'm not a marathon runner or a runner of any type so the metaphor isn't the best to apply to me, but it still makes sense. Nobody would expect a marathon runner to be as physically capable at the twenty-mile mark, even if they are doing subjectively well compared to how most runners are feeling at the same point of the race. And while I am doing pretty well - compared to other recipients of radiotherapy - I am still getting pretty tired at this point of the race.
But enough about marathons. Even talking about them is exhausting. I did mention going to the bathroom a few moments ago, and I haven't talked about poop with you in what feels like a really long time (for me). So, without any further ado...
If radiation weren't already exhausting, I'd be exhausted from wiping my butt and washing my hands that many times a day. Except - or so it seems - this is no longer my reality.
Wha-a-a-a...?
Yeah. Seriously.
I had actually noticed this just before my last update but didn't want to jinx my good luck by telling the world about it, but I am no longer pooping multiple times a day. Instead, I poop once a day, with a pretty normal volume of stool in a single bowel session rather than spread out (ewww... that was a bad choice of verb) over the day.
Once a day. Just like a normal person.
Well, maybe not like a normal person (it's still me after all), but more like what my normal bowel habit was before I had surgery. I used to have a bowel movement every morning - usually about 30-90 minutes after breakfast - and then often one more in the afternoon or evening. So while this is still not what my bathroom experience was preoperatively, it is way more normal and way easier to live my life around than what I've had for the past three months.
I have not adjusted my diet for the time being. I want to wait until after I am done radiotherapy before I introduce any other changes to my life (both my radiation and chemotherapy can cause diarrhea you see, and I don't want to aggravate this possibility with a dietary change as well), but hopefully next weekend I can add in some of the things that I like to my diet, like oatmeal or more fresh fruit and vegetables. And if that goes well, I could even consider something as crazy as going to a pub with friends and eating after 6:00 PM!
Assuming that I am actually finished radiotherapy next weekend, that is.
Remember when I said that this would be a "one and done" surgery, that I wouldn't need chemotherapy? And then, that if I did need chemo it would be six months of chemo alone?
Yeah, I remember that too.
I include the link to my treatment protocol in my posts because I want people to be as educated as possible about the realities of my treatment. If you look at the section titled Pelvic irradiation on page 3, you will see the phrase "Followed at the Radiation Oncologist’s discretion..." and then a bunch of other words that mean more radiation. So while I am excited to be finished radiotherapy, I might not be done quite yet.
But even if my journey takes another twist, I will follow it knowing that things are getting better all the time. I can see a life free of cancer ahead of me, just at the end of this treatment road that I am on.
And that, my friends, is a life worth living.
In my last post I mentioned how tired I am after radiotherapy. I wish could say that I'm getting used to radiotherapy - although trust me, I definitely don't want to get used to it! - but the truth is the exhaustion is, if anything, getting worse. I still feel perfectly fine and normal after my radiotherapy session, and for at least two hours after I still feel pretty good.
Then I feel like I'm swimming through oatmeal.
The tiredness doesn't come on all at once. It's not like I feel like I was hit by a truck or fell off a metaphorical cliff or anything, but over the space of less than fifteen minutes I go from pretty much perfectly normal to struggling to keep my eyes open.
Again, this is a weird sort of exhaustion. My brain is foggy, my eyes are heavy, my speech is slowed and my voice is soft and a little raspy - like I'm almost asleep. The only problem is that I am not sleepy, not even a little.
"Do you think having a nap would help?"
More than one person has asked me this. They ask it out of love and my heart is nurtured by the concern that motivates the question, but the fact is that I have never been one to nap so this is not something that even feels natural to me. I did try once this week, but I just lay there with my heavy eyes closed and my foggy brain still stubbornly staying awake. Half an hour I gave up and went back to my sedentary activities - reading, surfing the internet, and playing video games. I'm just not sleepy, and so I don't think that napping is going to help.
The exhaustion was noticeably worse this last Friday than it was the week before that, and that was worse than the week before it. Last Saturday was a write-off for me activity-wise, and although I woke up feeling well-rested at about 8:00 this morning by 8:10 I felt like I had been up for eighteen hours. I just have no energy - mental, physical, or emotional - to start any activity more strenuous than listening to music or going to the bathroom.
This is perfectly normal. I had an appointment with another new oncologist this week - that makes four involved in my care now - and mentioned being tired. "This protocol is a marathon, not a sprint," he told me. I've been told that by other members of my health care team; the metaphorical marathon here indicates that the toxicity of my regimen is spread out over a long period of time, rather than being grouped into brief but intense periods of toxicity. So it's not surprising that I am tired each afternoon and that the tiredness is getting more pronounced as time goes on - just like the exhaustion of a marathon runner as they pass the halfway point and continue the slow, steady grind to the finish line.
I'm not a marathon runner or a runner of any type so the metaphor isn't the best to apply to me, but it still makes sense. Nobody would expect a marathon runner to be as physically capable at the twenty-mile mark, even if they are doing subjectively well compared to how most runners are feeling at the same point of the race. And while I am doing pretty well - compared to other recipients of radiotherapy - I am still getting pretty tired at this point of the race.
But enough about marathons. Even talking about them is exhausting. I did mention going to the bathroom a few moments ago, and I haven't talked about poop with you in what feels like a really long time (for me). So, without any further ado...
Update from the water closet...
I've mentioned (like, ad nauseam I would estimate) that I've had to be very careful about my diet and timing of eating since my surgery. I've mentioned that Lower Anterior Resection Syndrome (LARS) is a collection of symptoms that most patients who've had my type of surgery experience to greater or lesser degrees. And I certainly experienced them, almost immediately after my surgery. The most noticeable symptom I had was very frequent, very small bowel movements (up to twenty times a day), and in order to manage those I had to be on a low fibre diet, eat small amounts frequently throughout the day, and not eat after the early evening to keep from being woken up multiple times overnight to poop.If radiation weren't already exhausting, I'd be exhausted from wiping my butt and washing my hands that many times a day. Except - or so it seems - this is no longer my reality.
Wha-a-a-a...?
Yeah. Seriously.
I had actually noticed this just before my last update but didn't want to jinx my good luck by telling the world about it, but I am no longer pooping multiple times a day. Instead, I poop once a day, with a pretty normal volume of stool in a single bowel session rather than spread out (ewww... that was a bad choice of verb) over the day.
Once a day. Just like a normal person.
Well, maybe not like a normal person (it's still me after all), but more like what my normal bowel habit was before I had surgery. I used to have a bowel movement every morning - usually about 30-90 minutes after breakfast - and then often one more in the afternoon or evening. So while this is still not what my bathroom experience was preoperatively, it is way more normal and way easier to live my life around than what I've had for the past three months.
I have not adjusted my diet for the time being. I want to wait until after I am done radiotherapy before I introduce any other changes to my life (both my radiation and chemotherapy can cause diarrhea you see, and I don't want to aggravate this possibility with a dietary change as well), but hopefully next weekend I can add in some of the things that I like to my diet, like oatmeal or more fresh fruit and vegetables. And if that goes well, I could even consider something as crazy as going to a pub with friends and eating after 6:00 PM!
Assuming that I am actually finished radiotherapy next weekend, that is.
"But... you said you'd be done your radiotherapy next Friday?"
Yeah - I say a lot of crazy things. And they are accurate when I say them, it's just that things change.Remember when I said that this would be a "one and done" surgery, that I wouldn't need chemotherapy? And then, that if I did need chemo it would be six months of chemo alone?
Yeah, I remember that too.
I include the link to my treatment protocol in my posts because I want people to be as educated as possible about the realities of my treatment. If you look at the section titled Pelvic irradiation on page 3, you will see the phrase "Followed at the Radiation Oncologist’s discretion..." and then a bunch of other words that mean more radiation. So while I am excited to be finished radiotherapy, I might not be done quite yet.
But even if my journey takes another twist, I will follow it knowing that things are getting better all the time. I can see a life free of cancer ahead of me, just at the end of this treatment road that I am on.
And that, my friends, is a life worth living.
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