I've been really down recently. I wasn't sure why, until I realized - it's my end of "active" treatment anniversary. I ended radiation a year ago. And... I guess I I was hoping for more? More healing, more health, more energy, more distance. More distance, less cancer.
It doesn't stop. It just goes on and on and on and on. It isn't a matter of wishing or hoping.
It's this: every morning, I hobble around like I am walking on hot coals, because that's what my feet feel like. This is how my day starts EVERY DAY. And also every time I've been sitting or otherwise not weight-bearing for about fifteen minutes, and then stand up -- although not as bad as mornings, by a long shot. I'm so used to my feet hurting all the time, I don't even hobble on them except in the morning. They just hurt all the time. This side effect is from Femara, which is helping make sure my cancer, if it is floating around, is more likely to starve and die instead of thrive and grow. So how do I leave cancer behind when it reminds me in the morning, every morning? After each meal? After each drive to get the kids? I can't move on from it, because it isn't moving on from me. I have to take this drug at least 4 more years. I guess that's better than five years, since it's been a year already. But then after that there's another drug for five years that has similar side effects.
It's also this: I feel like a tin man when I wake up. I have to move my joints slowly, because that's all I can do. While I hobble around on these feet. I have actually fallen down a few times, to my knees, because my joint won't unbend and my feet hurt too much to hold weight.
It's also this: my lungs -- I either have radiation pneumonitis, or I had a respiratory infection that resulted in excessive restrictive response by my lungs. The restriction qualified as "restrictive lung disease" -- i.e., I couldn't get enough air volume in to measure. My radiation oncologist told me yesterday that he doesn't know which it is, and there is no way to know for sure (i.e., no test for it). But if it is pneumonitis, which would be unlikely given my radiation dose and the amount of time it has been, that's forever. And if it is the other thing? Well, that will happen every time I get a cold/chest thing now. So I can't work out much, because I can't really breathe. And breathing is pretty important. But the chest xray was clear, so no known metastasis yet. I'm the lucky one, I know.
(I also have an injury to my coccyx, of unknown origin (other than probably related to childbirth) which is hard to treat, and lingers. So I can't stand or sit without pain. Yay. I can't pin this on cancer, and I think we've ruled out a tumor on the coccyx, but it doesn't help that my ass hurts too.)
It's also these things: I've gained 20lbs and my clothes don't fit. I still have ridiculous eyebrows that are at least starting to grow back, but they look nothing like they used to. I have a Koosh ball on my head masquerading as hair. These three things make it so when I look in the mirror, the person looking back at me is a stranger. In my head, I look like me, but in the mirror, I don't.
It's also this: I have hot flashes, not all the time, just mornings and evenings, and when temperatures change, such as when I go from inside to outside. I sport a nice bulgy scar where my port used to be that stares at me in the mirror. At least my other scars had the politeness to heal better since radiation peeled the skin off my whole breast, including those scars.
And it's this, which is one of the worst: I run out of energy at around 8pm, which is better than 7pm, but not as good as having enough energy to put your kids to bed without yelling at them. And then my sleep is interrupted by guilt, pain, anxiety, and hot flashes.
I was hoping for so much more on this anniversary. I didn't realize I was pinning any hopes on the one-year mark at all. But then it hit me that it had been a year. And I was hoping to not think about cancer every day, multiple times. I was hoping for my brain to work enough that I could accomplish something and feel competent again.
I was hoping to feel alive again. Because I don't want to survive my life, day by day by day. And right now, that's what I feel like I am doing. This is what's real. This isn't dwelling. I can't move on; it's not moving on from me. This is my life every day. And I don't like it that much right now, really. I grieve. I don't know what else to do.
What a downer blog post. Sorry, ugh.
It doesn't stop. It just goes on and on and on and on. It isn't a matter of wishing or hoping.
It's this: every morning, I hobble around like I am walking on hot coals, because that's what my feet feel like. This is how my day starts EVERY DAY. And also every time I've been sitting or otherwise not weight-bearing for about fifteen minutes, and then stand up -- although not as bad as mornings, by a long shot. I'm so used to my feet hurting all the time, I don't even hobble on them except in the morning. They just hurt all the time. This side effect is from Femara, which is helping make sure my cancer, if it is floating around, is more likely to starve and die instead of thrive and grow. So how do I leave cancer behind when it reminds me in the morning, every morning? After each meal? After each drive to get the kids? I can't move on from it, because it isn't moving on from me. I have to take this drug at least 4 more years. I guess that's better than five years, since it's been a year already. But then after that there's another drug for five years that has similar side effects.
It's also this: I feel like a tin man when I wake up. I have to move my joints slowly, because that's all I can do. While I hobble around on these feet. I have actually fallen down a few times, to my knees, because my joint won't unbend and my feet hurt too much to hold weight.
It's also this: my lungs -- I either have radiation pneumonitis, or I had a respiratory infection that resulted in excessive restrictive response by my lungs. The restriction qualified as "restrictive lung disease" -- i.e., I couldn't get enough air volume in to measure. My radiation oncologist told me yesterday that he doesn't know which it is, and there is no way to know for sure (i.e., no test for it). But if it is pneumonitis, which would be unlikely given my radiation dose and the amount of time it has been, that's forever. And if it is the other thing? Well, that will happen every time I get a cold/chest thing now. So I can't work out much, because I can't really breathe. And breathing is pretty important. But the chest xray was clear, so no known metastasis yet. I'm the lucky one, I know.
(I also have an injury to my coccyx, of unknown origin (other than probably related to childbirth) which is hard to treat, and lingers. So I can't stand or sit without pain. Yay. I can't pin this on cancer, and I think we've ruled out a tumor on the coccyx, but it doesn't help that my ass hurts too.)
It's also these things: I've gained 20lbs and my clothes don't fit. I still have ridiculous eyebrows that are at least starting to grow back, but they look nothing like they used to. I have a Koosh ball on my head masquerading as hair. These three things make it so when I look in the mirror, the person looking back at me is a stranger. In my head, I look like me, but in the mirror, I don't.
It's also this: I have hot flashes, not all the time, just mornings and evenings, and when temperatures change, such as when I go from inside to outside. I sport a nice bulgy scar where my port used to be that stares at me in the mirror. At least my other scars had the politeness to heal better since radiation peeled the skin off my whole breast, including those scars.
And it's this, which is one of the worst: I run out of energy at around 8pm, which is better than 7pm, but not as good as having enough energy to put your kids to bed without yelling at them. And then my sleep is interrupted by guilt, pain, anxiety, and hot flashes.
I was hoping for so much more on this anniversary. I didn't realize I was pinning any hopes on the one-year mark at all. But then it hit me that it had been a year. And I was hoping to not think about cancer every day, multiple times. I was hoping for my brain to work enough that I could accomplish something and feel competent again.
I was hoping to feel alive again. Because I don't want to survive my life, day by day by day. And right now, that's what I feel like I am doing. This is what's real. This isn't dwelling. I can't move on; it's not moving on from me. This is my life every day. And I don't like it that much right now, really. I grieve. I don't know what else to do.
What a downer blog post. Sorry, ugh.
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