My body is a giant science experience every, single day and I'm the highly inexperienced lab technician trying to find the right balance, and monitor and track the relevant outcomes.
I have a boatload of meds on board, each designed for their own specific purpose. Then I've got the big, ol' experimental cancer one, which can cause all kinds of unknowns - and potentially work at cross purposes to the other drugs.
The Rininidine, an antacid is probably the most common of them all, and I have no problems popping that baby in my gullet morning and night to stave the flow of acid up my throat. I also have no issues with the mind-quelling Lorazepam, designed to help me sleep.
The Dexamethazone, a steroid to prevent vomiting, is also doing its valuable job. It's side-effects have also helped me recapture an appreciation for food: It has taste again, I get hungry and I want to eat. That's good, although I know in the past this steroid affected my personality in a negative way (read: bitchy), but so far, so good. Perhaps the dose is too low or perhaps this reprecussion is squashed by the other drugs.
I'm having trouble with the Domperindone, the tiny pill designed to move the food through my system. My yellow prescription bottle instructs me to take it half an hour before each meal and at bedtime, which I was doing religiously until Friday night. Then it worked too well. I had eight bouts of diahrrea between midnight and 10 a.m. on Saturday morning. Being chained to the toilet is not a happy place to be.
So I stopped the Domperindone cold turkey. But then I ceased having bowel movements. So I started a little experiment taking one a day. This morning, I had a few negative side effects with repeated trips to the bathroom, but I hope this cause-and-effect is short lived.
Of course, the Regorafinib can also cause diahrrea. So, which med is it? How do I balance it? It's all trial and error with my body, its functions, my stinkiness and my embarassment caught in the crossfire.
As for the Regorafinib, I think I'm starting to experience some side effects from the drug. My stomach hurts when it's empty; a stabbing, aching, weird sensation that begs for food. So I'm trying to keep smaller staches of snacks on my person at all times, for the longer I go with the empty aching feeling, the worse I feel.
I'm also getting some sensitivity and dryness in my hands and feet. My fingertips are red, sensitive, tingly and burning. Hot water running over them hurts. I knew this was a possibility and will talk to my doc about it on Monday, as apparently he can prescribe a cream to help.
I also think the Regorafinib flattens my personality a bit. I seem to be thinking, moving and reacting slower (unless of course, I blow a gasket and have a temper tantrum - hello steroid? frustration? anger?). I feel less enthusiastic and engaged sometimes. In a way, it helps me more calmly approach situations and brush off situations that really shouldn't matter, but it's a weird sensation. I guess I'll see what happens longer term.
Draining is slow. I'm only getting 50 to 75 mL a day. I'm a little bloated, but not crazily so. So perhaps that's good news and the drug is working. I've got my fingers crossed.
Emotionally, the whole bodily experiment has me a bit down, but I'm doing my best to cope and approach each day as a new one. I have to stick to my mantras: One day at a time and die cancer die!
Tina
Wow - hugs to you Tina - hang in there!
ReplyDeleteJill