Still alive. Not much kicking.
So, we left off with day 1 of round 3. I don't really feel like going into day by day detail about it, but let's just say round 3 SUCKED. I lost 16 pounds in 8 days (mostly dehydration I'm sure), I ended up going in for IV fluids twice, changed acid control meds again, saw a GI specialist, learned that technically there isn't anything wrong with me. Which on the one hand is somewhat validating; I've always had a weird, sensitive stomach, and I've always taken care of it by controlling what I eat. Guess I was doing a good job. Chemo, however, has thrown that all out of whack and I can't fix it anymore. He even did an endoscopy so he could be sure I didn't have an ulcer or other damage in there, and it's all good. I'm just special. Yay...
So when it came time for my pre-round-4 checkup, I was pretty firm with my oncologist that I need some help here. If the GI doc says I'm fine, but chemo makes it so I can't eat or drink anything for a week, we have a problem. Seriously. And I did a bunch of research about my particular chemo drug cocktail, turns out that a "full course" is considered 4-6 rounds, none of this "6 rounds then surgery then 4 more rounds" stuff she was talking about. So what I found out is that she didn't mean I would do 10 total rounds of this set of drugs. She wanted me to do a full 6 round course of this one (TCHP, if anyone wants to look it up), then surgery, then radiation (which was NEVER mentioned before, I'll add), and then an additional 4 rounds of a *different* chemo cocktail. ACP, I think she said? Well, turns out I don't care, because as of right now that's a big ol' NO from me. I've read hundreds of treatment plans online and I can't find even ONE person who did 6 rounds of TCHP and then went on to do 4 rounds of any additional chemo. Her reasoning is that I'm young, and she really doesn't want it to come back. Hey, I don't either! But if I don't have cancer, which I won't by the time I'm finished with surgery and radiation, what on earth is the point of doing chemo to my perfectly healthy body? I will already be on a hormone therapy regimen for a year that is supposed to stop reoccurrence, that sounds good enough to me.
Anyway. She reduced the amount of steroid I take before and after chemo in the hopes that it would bring down some of the stomach irritation, and scheduled me for IV hydration in advance, but that's about all anyone could think to do to help me for round 4. Which, honestly, was not terribly encouraging, but I was hopeful anyway. I'm dumb like that. ;) I did round 4 on Monday the 3rd as scheduled, and things seemed pretty okay. Usually I started feeling pretty crummy by Thursday, and this time I was still eating and drinking okay by then so I got encouraged. Maybe it would be better! Friday was okay too, aw yeah, moving into the weekend... then it was Saturday and it all got crappy again. It's hard to explain what happens, but it's not a nausea thing. I haven't thrown up this round at all. It's like there is so much acid in my stomach that I can taste it in my mouth, and it's in my throat (it isn't really or it would burn), and it's making it so I can't swallow anything else. Physically I can swallow, so I can still force myself to drink a little but it's very difficult. I feel like there is something else in my throat already and trying to swallow anything else sounds just horrible. So that was my weekend, and it was also just super demoralizing. I *really* thought maybe we had this figured out now, but it turns out we don't, and probably never will, and this is just what it's going to be like for me every time. Blech.
So, that's pretty much where we are. I went in for IV fluids yesterday and I'm going in again today. In the past 24 hours I've eaten two cups of Jello, an applesauce packet, and four Saltine crackers. And one ravioli! Though that was probably pushing it. I'm hopeful that I'll be eating again tomorrow, but I don't know. I doubt I will today. And I really miss food. BUT. If this really does only go two more rounds, then I *will* be eating food again by Thanksgiving. And it'll even taste good again by Christmas. And by New Years, I'll be finished with chemo, and finished with surgery, and moving on. 2016, you're a mean kid, and I can't wait until you're over.
So when it came time for my pre-round-4 checkup, I was pretty firm with my oncologist that I need some help here. If the GI doc says I'm fine, but chemo makes it so I can't eat or drink anything for a week, we have a problem. Seriously. And I did a bunch of research about my particular chemo drug cocktail, turns out that a "full course" is considered 4-6 rounds, none of this "6 rounds then surgery then 4 more rounds" stuff she was talking about. So what I found out is that she didn't mean I would do 10 total rounds of this set of drugs. She wanted me to do a full 6 round course of this one (TCHP, if anyone wants to look it up), then surgery, then radiation (which was NEVER mentioned before, I'll add), and then an additional 4 rounds of a *different* chemo cocktail. ACP, I think she said? Well, turns out I don't care, because as of right now that's a big ol' NO from me. I've read hundreds of treatment plans online and I can't find even ONE person who did 6 rounds of TCHP and then went on to do 4 rounds of any additional chemo. Her reasoning is that I'm young, and she really doesn't want it to come back. Hey, I don't either! But if I don't have cancer, which I won't by the time I'm finished with surgery and radiation, what on earth is the point of doing chemo to my perfectly healthy body? I will already be on a hormone therapy regimen for a year that is supposed to stop reoccurrence, that sounds good enough to me.
Anyway. She reduced the amount of steroid I take before and after chemo in the hopes that it would bring down some of the stomach irritation, and scheduled me for IV hydration in advance, but that's about all anyone could think to do to help me for round 4. Which, honestly, was not terribly encouraging, but I was hopeful anyway. I'm dumb like that. ;) I did round 4 on Monday the 3rd as scheduled, and things seemed pretty okay. Usually I started feeling pretty crummy by Thursday, and this time I was still eating and drinking okay by then so I got encouraged. Maybe it would be better! Friday was okay too, aw yeah, moving into the weekend... then it was Saturday and it all got crappy again. It's hard to explain what happens, but it's not a nausea thing. I haven't thrown up this round at all. It's like there is so much acid in my stomach that I can taste it in my mouth, and it's in my throat (it isn't really or it would burn), and it's making it so I can't swallow anything else. Physically I can swallow, so I can still force myself to drink a little but it's very difficult. I feel like there is something else in my throat already and trying to swallow anything else sounds just horrible. So that was my weekend, and it was also just super demoralizing. I *really* thought maybe we had this figured out now, but it turns out we don't, and probably never will, and this is just what it's going to be like for me every time. Blech.
So, that's pretty much where we are. I went in for IV fluids yesterday and I'm going in again today. In the past 24 hours I've eaten two cups of Jello, an applesauce packet, and four Saltine crackers. And one ravioli! Though that was probably pushing it. I'm hopeful that I'll be eating again tomorrow, but I don't know. I doubt I will today. And I really miss food. BUT. If this really does only go two more rounds, then I *will* be eating food again by Thanksgiving. And it'll even taste good again by Christmas. And by New Years, I'll be finished with chemo, and finished with surgery, and moving on. 2016, you're a mean kid, and I can't wait until you're over.