Today is not a good day.
It's hard for me to admit things like that, but I the truth is, it's been really difficult, albeit sort of off-and-on, to keep up the "positive" part of "Positively Phoebe". I'm struggling today more than I have in a while. I can't really even explain why. I just feel lost. Overwhelmed. Sad.
When I didn't hear from Dr. Avallone's scheduling person for the bladder biopsy procedure by Friday, I spent an hour on hold trying to call HER. I didn't want to wait out the weekend without having that shit on the books. But then when I finally did talk to her (and got the "surgery" scheduled for Monday, September 30th) she told me that I'd have to have some pre-procedure testing done and that I could expect to hear from that office next week. So I'm basically still waiting to find out just how much work I'll have to miss, and that is stressing me out. Ryan and I keep saying we are going to really work on NOT stressing out about money, but it's not that easy. He works constantly, but doesn't have an actual "job" so it's difficult to know when and or from where his next "payday" is coming. And while I make better money at my new job, I still struggle. I still have Clinic bills - the co-insurance portion of all the testing I've been through the past month is nearing a grand already. We say we're not going to worry, but how can we not?
And then there is the matter of this "procedure/surgery". I know it probably sounds INSANE after all I've been though, but I'm terrified of surgery. Of anesthesia. Of being in the hospital. I still remember being in Fairview on the day of my diagnosis and being completely relieved just a few moments after Erin Naso had told me I had cancer, when she said that surgery was not an option. And even though this biopsy is not a surgery in the traditional sense, it still involves the whole anesthesia thing and I am afraid of that.
I think that one of the hardest things, though, is how sharply into focus this whole experience is bringing the fact that my life will never be "normal" again. I'm always going to be at risk for cancer-y things. Doctors are always going to want to do scans and biopsies every time I don't feel quite right. And while, in some ways, that is kind of an awesome and reassuring thing... in a lot of other ways, it is truly difficult and upsetting. Not just for me - but for Ryan, too. He seems lost, afraid, and unfocused in a way that I don't know how to help with or even deal with myself. It frustrates me. It makes me sad. Makes me angry. Makes me feel guilty. Makes me feel alone... A few weeks ago, I was trying to explain to a friend of mine how hard all of this stuff has been for him, their response was basically that he really needs to suck it the fuck up and be there for ME. And all I can still think is, "If only it were that easy." Ryan is emotionally odd on a good day. And this whole cancer thing - I swear - it's broken him. And I don't know how to fix it. And I feel responsible for it. And I DO want him to be more OK - both because I worry about him terribly but also because I need him to be able to take care of ME during those times when I am NOT ok. I need him to just understand that what I need in these moments is to be hugged - REALLY hugged - instead of stared at with a terrified expression or yelled at in frustration.
It's all just so difficult. And no matter how much I try to look at the good - at the things like how much closer this has made us - it's still difficult sometimes not to be upset. It's still difficult to have days like today where I can't help but feel like I'm never going to be quite "right" ever again. I know tyhe feeling will pass. I know I'll be ok. I know Ryan will be ok. But right now, and maybe it's just because of the awesome chilly fall-ish weather, but all I feel up for is crawling into bed with a box of Kleenex and a cup of tea and hoping this shit is all over tomorrow.
When I didn't hear from Dr. Avallone's scheduling person for the bladder biopsy procedure by Friday, I spent an hour on hold trying to call HER. I didn't want to wait out the weekend without having that shit on the books. But then when I finally did talk to her (and got the "surgery" scheduled for Monday, September 30th) she told me that I'd have to have some pre-procedure testing done and that I could expect to hear from that office next week. So I'm basically still waiting to find out just how much work I'll have to miss, and that is stressing me out. Ryan and I keep saying we are going to really work on NOT stressing out about money, but it's not that easy. He works constantly, but doesn't have an actual "job" so it's difficult to know when and or from where his next "payday" is coming. And while I make better money at my new job, I still struggle. I still have Clinic bills - the co-insurance portion of all the testing I've been through the past month is nearing a grand already. We say we're not going to worry, but how can we not?
And then there is the matter of this "procedure/surgery". I know it probably sounds INSANE after all I've been though, but I'm terrified of surgery. Of anesthesia. Of being in the hospital. I still remember being in Fairview on the day of my diagnosis and being completely relieved just a few moments after Erin Naso had told me I had cancer, when she said that surgery was not an option. And even though this biopsy is not a surgery in the traditional sense, it still involves the whole anesthesia thing and I am afraid of that.
I think that one of the hardest things, though, is how sharply into focus this whole experience is bringing the fact that my life will never be "normal" again. I'm always going to be at risk for cancer-y things. Doctors are always going to want to do scans and biopsies every time I don't feel quite right. And while, in some ways, that is kind of an awesome and reassuring thing... in a lot of other ways, it is truly difficult and upsetting. Not just for me - but for Ryan, too. He seems lost, afraid, and unfocused in a way that I don't know how to help with or even deal with myself. It frustrates me. It makes me sad. Makes me angry. Makes me feel guilty. Makes me feel alone... A few weeks ago, I was trying to explain to a friend of mine how hard all of this stuff has been for him, their response was basically that he really needs to suck it the fuck up and be there for ME. And all I can still think is, "If only it were that easy." Ryan is emotionally odd on a good day. And this whole cancer thing - I swear - it's broken him. And I don't know how to fix it. And I feel responsible for it. And I DO want him to be more OK - both because I worry about him terribly but also because I need him to be able to take care of ME during those times when I am NOT ok. I need him to just understand that what I need in these moments is to be hugged - REALLY hugged - instead of stared at with a terrified expression or yelled at in frustration.
It's all just so difficult. And no matter how much I try to look at the good - at the things like how much closer this has made us - it's still difficult sometimes not to be upset. It's still difficult to have days like today where I can't help but feel like I'm never going to be quite "right" ever again. I know tyhe feeling will pass. I know I'll be ok. I know Ryan will be ok. But right now, and maybe it's just because of the awesome chilly fall-ish weather, but all I feel up for is crawling into bed with a box of Kleenex and a cup of tea and hoping this shit is all over tomorrow.
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xo