Today was the official start of round 2. I got there and checked in for my bloodwork at 12:45, and then waited for about 45 minutes while they did the labs and then spent close to an hour with Dr. M.
We didn't do an ultrasound today, but in the manual exam he commented that it feels different to him, and went back to check his notes from the last two exams. It's nice to know that it's not all in my head, the chemo is doing something. I told him that I think right now it feels the way it did in the shower over Memorial Day weekend. In the weeks following it got bigger and harder, rounder somehow - like the difference between a pecan and a ping pong ball. It's back to being a pecan now.
We talked a lot about meds and nutrition, and how to handle the massive attacks of diarrhea I've been having, followed by days of constipation. Turns out, that glutamine supplement that I'm taking to prevent neuropathy? Can give you the shits. I haven't been overdoing it - they recommended 5 mg 2 or 3 times per day, and that's exactly what I've been doing. Apparently, some women get the idea that more must be better and make themselves a lot sicker. So that might be a contributing factor, but I'd rather have the runs every day for six months than permanently lose feeling in my hands and feet. Choices. Dr. M agreed.
So next up was what to take for the runs and when to do it. My instinct for years has been that if my body wants this shit out, there's probably a good reason for it and to let things run their course and stay hydrated for a day or two, but if things flip to where it seems to be just happening because my gut is irritated from being sick, then I take the Imodium.
But that doesn't really translate here - there's nothing specific to get rid of. It's already irritated from the taxol and the LCL161 just triggers the physical response. So we decided that tonight I'd try something different - take Kaopectate (he specifically recommended it in this instance over anything else) when I get home, before I get sick. So I did that, and then ate a very bland dinner. My guts started rumbling at 8:30, and so now I'm taking a dose after every time I have to run for the toilet, and sipping on coconut water to stay hydrated. It's now 10:30 and I haven't had to run for the bathroom in the last half hour, which is an improvement.
The other thing is that today was the day we dropped steroids from the infusion - he said the study protocol calls for them and the benedryl during round 1, but not after that if I'm tolerating the taxol during the infusion. So when I mentioned that I drove myself and wasn't sure how long it would take to be ready to drive home, he said we could just drop the benedryl and see what happens. So we did.
They limit how much goes in the line per minute, so we stretched what should be an hour at full speed out to about 90 minutes, starting slow and ramping up the volume every five minutes as we tested the theory. I did fine. Next week we'll do it slow again without the extras and if that goes well, all future infusions will be just taxol, saline, and pepcid (for the reflux) at full speed.
While I was plugged in the nutritionist came by to chat. She agreed with the kaopectate and coconut water advice, and said the juice idea is a bad one. Just skip the greens entirely for now. Millions of people manage to survive without ever eating vegetables and I can get everything I need from other sources. She said it might not be a bad idea when I'm recovering from surgery in the spring, but for now it's not just unnecessary, but could make things worse. OK then. She does approve of smoothies and other fruits and veggies, but wants me to limit them to 4 oz servings, and said that there will probably be a point later when I need to drop most fruit as well. That'll be a bummer, but it will also be late fall by then and the main farmer's market options will be apples and squash, which should both be OK. We agreed that I'd keep my food diary for a week, and track how I'm feeling and when I'm taking meds as well, and then she'll come sit with me next week during my infusion and we can walk through it and look for places to improve.
I felt perfectly fine walking out of there - a little tired, but not stoopid and tired, which is good. I'm really glad I can continue to drive myself for a while longer - there's going to be a point where I can't. But for now I'm good.
And I'm tired, which is a good thing. Even if I do end up with cramping and the runs all night like last week, overall today was a good day. I felt better. I'm definitely sick. But I'm definitely better.
We didn't do an ultrasound today, but in the manual exam he commented that it feels different to him, and went back to check his notes from the last two exams. It's nice to know that it's not all in my head, the chemo is doing something. I told him that I think right now it feels the way it did in the shower over Memorial Day weekend. In the weeks following it got bigger and harder, rounder somehow - like the difference between a pecan and a ping pong ball. It's back to being a pecan now.
We talked a lot about meds and nutrition, and how to handle the massive attacks of diarrhea I've been having, followed by days of constipation. Turns out, that glutamine supplement that I'm taking to prevent neuropathy? Can give you the shits. I haven't been overdoing it - they recommended 5 mg 2 or 3 times per day, and that's exactly what I've been doing. Apparently, some women get the idea that more must be better and make themselves a lot sicker. So that might be a contributing factor, but I'd rather have the runs every day for six months than permanently lose feeling in my hands and feet. Choices. Dr. M agreed.
So next up was what to take for the runs and when to do it. My instinct for years has been that if my body wants this shit out, there's probably a good reason for it and to let things run their course and stay hydrated for a day or two, but if things flip to where it seems to be just happening because my gut is irritated from being sick, then I take the Imodium.
But that doesn't really translate here - there's nothing specific to get rid of. It's already irritated from the taxol and the LCL161 just triggers the physical response. So we decided that tonight I'd try something different - take Kaopectate (he specifically recommended it in this instance over anything else) when I get home, before I get sick. So I did that, and then ate a very bland dinner. My guts started rumbling at 8:30, and so now I'm taking a dose after every time I have to run for the toilet, and sipping on coconut water to stay hydrated. It's now 10:30 and I haven't had to run for the bathroom in the last half hour, which is an improvement.
The other thing is that today was the day we dropped steroids from the infusion - he said the study protocol calls for them and the benedryl during round 1, but not after that if I'm tolerating the taxol during the infusion. So when I mentioned that I drove myself and wasn't sure how long it would take to be ready to drive home, he said we could just drop the benedryl and see what happens. So we did.
They limit how much goes in the line per minute, so we stretched what should be an hour at full speed out to about 90 minutes, starting slow and ramping up the volume every five minutes as we tested the theory. I did fine. Next week we'll do it slow again without the extras and if that goes well, all future infusions will be just taxol, saline, and pepcid (for the reflux) at full speed.
While I was plugged in the nutritionist came by to chat. She agreed with the kaopectate and coconut water advice, and said the juice idea is a bad one. Just skip the greens entirely for now. Millions of people manage to survive without ever eating vegetables and I can get everything I need from other sources. She said it might not be a bad idea when I'm recovering from surgery in the spring, but for now it's not just unnecessary, but could make things worse. OK then. She does approve of smoothies and other fruits and veggies, but wants me to limit them to 4 oz servings, and said that there will probably be a point later when I need to drop most fruit as well. That'll be a bummer, but it will also be late fall by then and the main farmer's market options will be apples and squash, which should both be OK. We agreed that I'd keep my food diary for a week, and track how I'm feeling and when I'm taking meds as well, and then she'll come sit with me next week during my infusion and we can walk through it and look for places to improve.
I felt perfectly fine walking out of there - a little tired, but not stoopid and tired, which is good. I'm really glad I can continue to drive myself for a while longer - there's going to be a point where I can't. But for now I'm good.
And I'm tired, which is a good thing. Even if I do end up with cramping and the runs all night like last week, overall today was a good day. I felt better. I'm definitely sick. But I'm definitely better.
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