Thought I’d finish off the weekend with an entry about getting unplugged from my infusion last Friday. Rob came into the city Friday afternoon and met me at work to walk over to MSK for the de-coupling ceremony. It’s pretty quiet there on a late Friday afternoon, so there was little waiting. I’m glad it wasn’t busy because we had some questions for the chemo nurse about side effects and I needed a blood draw for the study.
It turns out that my jaw pain when I eat is a common side effect of the Oxaliplatin. Not much they can do about it, though. But I’m learning that being ABLE to do something about a symptom doesn’t mean you WANT to do something about it. For example – 5FU makes you nauseous. For this they give you anti-nausea drugs which make you constipated. But this can be helped with another pill that only gives you stomach cramps. So, like someone making soup without a recipe, I’m trying to figure out how much or how often to take these various things to balance it all out. Or maybe I’ll just live with some of it. If I can get the balance just right, I think I can go back to ballroom dancing…
The de-coupling ceremony was pretty straightforward. It does take a little bit of equipment and two hands so I doubt I could do it by myself without a lot of practice. But Rob was eager to learn de-coupling skills and she’s volunteered to be the master of ceremonies once they let us do it ourselves.
The process is to first disconnect the pump and then to inject the line with a syringe of saline to push any remaining chemo through it. Then you inject a syringe of Heparin, a blood thinner, which fills the port so that no blood clots form in it while it’s not being actively used. Then, you remove the medical tape pads used to attach the tubes to the chest. (Ladies – these easy-peel pads are great for hair removal!). And then, you pull the needle out. The needle is actually inside a little plastic device which is rather cleverly designed and helps make it easier to pull it out cleanly.
After getting unplugged, Rob and I came home where I pretty promptly fell asleep. Actually, I spent the better part of this weekend sleeping or resting. I’m finally feeling a little more normal today. The nausea and fatigue are definitely the most taxing aspects of chemo – just as advertised in those glossy bochures!
It turns out that my jaw pain when I eat is a common side effect of the Oxaliplatin. Not much they can do about it, though. But I’m learning that being ABLE to do something about a symptom doesn’t mean you WANT to do something about it. For example – 5FU makes you nauseous. For this they give you anti-nausea drugs which make you constipated. But this can be helped with another pill that only gives you stomach cramps. So, like someone making soup without a recipe, I’m trying to figure out how much or how often to take these various things to balance it all out. Or maybe I’ll just live with some of it. If I can get the balance just right, I think I can go back to ballroom dancing…
The de-coupling ceremony was pretty straightforward. It does take a little bit of equipment and two hands so I doubt I could do it by myself without a lot of practice. But Rob was eager to learn de-coupling skills and she’s volunteered to be the master of ceremonies once they let us do it ourselves.
The process is to first disconnect the pump and then to inject the line with a syringe of saline to push any remaining chemo through it. Then you inject a syringe of Heparin, a blood thinner, which fills the port so that no blood clots form in it while it’s not being actively used. Then, you remove the medical tape pads used to attach the tubes to the chest. (Ladies – these easy-peel pads are great for hair removal!). And then, you pull the needle out. The needle is actually inside a little plastic device which is rather cleverly designed and helps make it easier to pull it out cleanly.
After getting unplugged, Rob and I came home where I pretty promptly fell asleep. Actually, I spent the better part of this weekend sleeping or resting. I’m finally feeling a little more normal today. The nausea and fatigue are definitely the most taxing aspects of chemo – just as advertised in those glossy bochures!
So I’m on a chemical holiday now (and it feels like nirvana to be unplugged!)...until round 2 starts on December 2nd!
Happy Thanksgiving to you all!!!
7 comments:
Congratulations on your separation from chemo. I'm glad to hear you're holding up! See you in 4 days! Love, Sara Bean
I'm hoping you won't be serving soup on Thanksgiving.
Hmm - jaw hurts, liquids are good, chemo holiday - sounds like it's time for some bushies?
Keep going bud! Were you awake for the Giants effort - or my Eagls debaucle??!!!!!
And I thought all you had to do was pull out the needle!
Hey, if you want to try the anti-nausea med next time, I can bring over some of Tom's homemade bran muffins. Or if your jaw hurts, my mom's favorite remedy - PRUNE JUICE. Guess I could go with the new marketing name of dried plum juice.
Happy Thanksgiving to everyone!
Amazing how quickly you applied your body, heart and soul to the issues at hand. Like discovering carpenter ants in your house you do the deep dive and look to take care of the situation. Brian in your case it's much more personal so thanks for sharing with the blow-by-blow front seat coverage. It's educational, fearless and strong. Go dude!
Hi Brian, Your story is inspiring to read -- I pray that it helps to keep you strong - you are doing an amazing job of staying grounded. I hope the days off from the chemo give you some relief and you can enjoy Thanksgiving! best wishes for time of warmth and love with your family. Hope to see you soon, rabbi amy
Hey Brian and Robbie,
Glad your thanksgiving went well. the de-coupling sounds like you need an engineering degree! I would hope the "coupling" part of it was more fun.
Kathy Sheedy and I are starting a "colon cleanse" diet - so if the constipation becomes problematic, we can share our good stuff. I haven't started yet, but one of the comments I read on-line said it was like the flu x's 100 - can't wait!
But I've heard that a fine single malt can help almost any situation - keep that in mind.
Hang in there - we're all sending our best vibes your way.
Kerry
Post a Comment