modify_evolution
Day 318- Fly Away
Today I went to Casey's hospital appointments with her. She goes once a week now to the oncology clinic to get an infusion (they call it chemo, but it's really an experimental drug to help prime her immune system against the cancer cells) and meet with her doctors.
I'd talked with her about this before, so it wasn't a surprise. But we called together her social worker, nurse practitioner, and therapist to talk about getting Casey in a mental and physical place where she can live on her own when our lease is up in May.
She does still have cancer; she has a couple nodules in her lungs, but they have stabilized with the experimental chemo and aren't growing as fast as before (they were doubling in size nearly every month before her last surgical procedure). We are settling into the "living with cancer" phase. Which honestly, until very recently, I didn't realize was a possibility. We all thought she would get better or die, and we would know which one within a year or two. We're going on two and a half years with no end in sight. I didn't realize that she could live a relatively normal, otherwise-healthy life with active cancer for several years.
There are two reasons I want to get her living on her own.
1. So she can better enjoy the years she has left. Right now, she's spending nearly all her waking time at her computer. She's not going out at all, even with the handicap accessible van. Her nurse practitioner offered play tickets which she didn't take her up on, I found some classes through the city for disabled people (stuff like swimming, which with her new, cheaper colostomy supplies wouldn't work, but stuff like that), and she didn't follow through with Mom, who offered to go with her. She did this same thing in high school, and she really just needed to be shoved out into the world to get over it. She did great her one year at college, and I want to give her the opportunity to do that again.
2. Yes, part of this is selfish on my part. I'm burning out. I'm angry all the time (more than usual), and I'm not sleeping well. I'm getting bitter and angry at her for things that are out of her control. I've been job hunting around Milwaukee since I got my job (it doesn't pay enough to save up money at all, and I can't afford anything big. Like a car. Oh hey, did I mention the entire exhaust system is falling out of my car? Because it is), and I haven't gotten any calls back. Ever. So part of it is that if I can feel confident that she can live on her own, maybe I can move a little further away (I'm thinking Madison; just about two hours away. Nothing major).
But part of it too is that I'm 25. I feel like I am wasting my 20s. I'm realizing this isn't just about Casey's life, it's about mine, too. And I have done absolutely nothing with mine since I graduated from college. I don't regret moving back, not at all. If I could go back in time, I'd make the same decision. But I'm not going to do this for someone who could be living on their own. It's starting to feel like enabling.
Day 318- Fly Away
Today I went to Casey's hospital appointments with her. She goes once a week now to the oncology clinic to get an infusion (they call it chemo, but it's really an experimental drug to help prime her immune system against the cancer cells) and meet with her doctors.
I'd talked with her about this before, so it wasn't a surprise. But we called together her social worker, nurse practitioner, and therapist to talk about getting Casey in a mental and physical place where she can live on her own when our lease is up in May.
She does still have cancer; she has a couple nodules in her lungs, but they have stabilized with the experimental chemo and aren't growing as fast as before (they were doubling in size nearly every month before her last surgical procedure). We are settling into the "living with cancer" phase. Which honestly, until very recently, I didn't realize was a possibility. We all thought she would get better or die, and we would know which one within a year or two. We're going on two and a half years with no end in sight. I didn't realize that she could live a relatively normal, otherwise-healthy life with active cancer for several years.
There are two reasons I want to get her living on her own.
1. So she can better enjoy the years she has left. Right now, she's spending nearly all her waking time at her computer. She's not going out at all, even with the handicap accessible van. Her nurse practitioner offered play tickets which she didn't take her up on, I found some classes through the city for disabled people (stuff like swimming, which with her new, cheaper colostomy supplies wouldn't work, but stuff like that), and she didn't follow through with Mom, who offered to go with her. She did this same thing in high school, and she really just needed to be shoved out into the world to get over it. She did great her one year at college, and I want to give her the opportunity to do that again.
2. Yes, part of this is selfish on my part. I'm burning out. I'm angry all the time (more than usual), and I'm not sleeping well. I'm getting bitter and angry at her for things that are out of her control. I've been job hunting around Milwaukee since I got my job (it doesn't pay enough to save up money at all, and I can't afford anything big. Like a car. Oh hey, did I mention the entire exhaust system is falling out of my car? Because it is), and I haven't gotten any calls back. Ever. So part of it is that if I can feel confident that she can live on her own, maybe I can move a little further away (I'm thinking Madison; just about two hours away. Nothing major).
But part of it too is that I'm 25. I feel like I am wasting my 20s. I'm realizing this isn't just about Casey's life, it's about mine, too. And I have done absolutely nothing with mine since I graduated from college. I don't regret moving back, not at all. If I could go back in time, I'd make the same decision. But I'm not going to do this for someone who could be living on their own. It's starting to feel like enabling.