… well, after today’s session.
And wow, as I sit here with my throbbingly painful “chemo arm” and weak & useless achy “chemo hand”, I am convinced that getting the port is the right way to go. It is seriously going take away one of the worst side effects I get from my present chemo regimen (Xelox/Oxiplatin infusion; Xeloda chemo pills). And so, if the new whack of anti-nausea pills also work, then I’ll only – ha! – have to put up with the cold thang (not being able to touch, eat or drink anything cold), and feeling really really tired for about ten days out of the three-week cycle. “Razor throat” and “metal mouth” are also quite unpleasant, but they usually only last for 5 and 10 days respectively, and they don’t stop me from doing stuff (just from doing them pleasantly) …
Judy and I got to the hospital around 11.30 and got quite a lot done (organised the new meds at the pharmacy, got the Xeloda presecription approved, picked up the “prep stuff” for my colonoscopy, and made the next appointment with Dr Ana – 22 April, the day before the next chemo session) before we finally got called into the chemo room. I was given the first Emend pill and then three different drips solutions (one more than previously) before they started with the chemo cocktail. So we decided to have the picnic before they put in the icky stuff … and it was fab. NO leftovers (sorry Nog!). But I’ll have to remember to bring mineral water next time because the food & drink trolley is very hit & miss.
I also remembered from experience to ask for the little electric arm blanket immediately and not wait until after the arm starts hurting … and this helped. The actual chair time was extended to 3 hours with the Emend, but if it works, what the heck. Also, it seems like people with ports have their chair time cut down considerably (though this may have had to do with their own particular cocktail).
So, I am keeping up my graphs and was also given a small form to keep track of all the anti-nausea meds over the next four days (emend, ondansetron, dexamatasona & lorazepan) and how many “nausea episodes” I get.
And if all goes well, I should be back to yoga class on Monday. 🙂
casa azahar 
You’re such a damned trooper, Az.
Your spirits don’t sound too soggy which is wonderful. I hope the emend does what it’s supposed to, that would be lovely.
What is the cold thing about, do you know? I mean, what makes it happen? It sounds so effing unpleasant. But easier to deal with than the nausea, I suppose.
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If “metal mouth” is ANYTHING like what it was like after I had most of my back teeth coated with amalgam (apparently, for no real reason, it turned out… just a dentist wanting to make a lot of extra cash) that reason ALONE would be enough to get the post put in… Like eating aluminum foil for weeks on end.
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ugh, it all sounds ghastly. I have nothing but admiration for you and how you’re handling it all. And that port sounds like an extremely cunning plan 🙂
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The port shortens the chair time because the drips can go faster into the larger blood volume that the port provides. Instead of the little thin pipe of your hand vein, it goes into one of the big vessels near your heart. It’s like the difference between a drinking straw and a water main.
Here’s hoping the Emend works, and that you have an easier time with this round.
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Well, I’m up and drinking coffee in bed (thanks Nog!) and have just taken the three morning pills: Emend, dexametasona & lorazepan. The latter is some sort of tranq, which I suppose won’t hurt. Especially as I am planning to nap a lot this weekend.
Was reading up on Emend and is says not to take it if you have liver problems. I guess tumours don’t count? Also some of the side effects are a bit disturbing, but I hope to be napping through most of them.
I’ll be starting the Xeloda chemo pills a bit later today. I’m supposed to take them twice a day, either two hours before or after eating, so 11am and 11pm work good for me.
My metal mouth is from the infusion I think, which has platinum in it, and it makes my mouth taste all metally. Sucking on orangy-flavoured hard candies helps a bit.
The cold thing also stems from the infusion. Hands and feet (and the chemo arm) become extremely sensitive to cold (this is also what causes razor throat). Dr Ana told me this should only last a couple of days, but although the worst of it is over for me after the first week, I still can’t drink a cold beverage or take things out of the fridge without using a tea towel until about day 10.
I could feel the difference coming home yesterday because, although it isn’t actually cold here right now, it’s much cooler than it was last July/August. My chemo arm started really throbbing when I got out of the taxi and my fingertips starting “pinging” like mad. Cool breeze.
Finally home, I put away my med stash and my medical file and decided to take a long hot shower to wash the hospital off me. Kicked off my sandals and went gaaaaaaa!!! as PAIN shot up through the soles of my feet. Again, the floors weren’t exactly cold, but they weren’t as warm as when it’s 40º out there. In fact, last summer I didn’t even notice any feet issues. Even the bathtub never cooled off. Anyhow, it’ll be socks and slippers for sure now.
So I’m having to be extra careful about what I touch. I learned the hard way about what not to drink after my first ever chemo session. Had gone out with nursemyra for tapas afterwards and asked José for a glass of tap water, took a big swig and my head nearly exploded. Searing pain all through my jaw and up my ears, and my throat totally seized up. Live and learn,eh?
Yeah, cann’t wait for that port. Even now I might be feeling almost normal if my “chemo arm” wasn’t hurting so much. I had been worrying at first that I might end up with “chemo chest” but apparently because the stuff can get through quicker this doesn’t happen. Plus it can be used for extracting blood and during PET scans, etc. No more pokes!
“Your spirits don’t sound too soggy which is wonderful.”
I think I’m just happy that something is finally being done, Beth. That “wait & watch” thing wasn’t going over to well with me, especially as I had missed having the adjuvant (post-op) chemo. Well, I’m having it now.
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I wondered about not having the postop chemo, but we tend to listen to our physicians.
It sounds like things are going better for you this time around, hope that the antinausea drugs are working.
That cold thing, though. That sounds positively horrible. Something about the chemo must super-sensitive your nerve endings.
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I don’t tend to listen to my physicians (at least I don’t just follow doctor’s orders blindly), hmh. Which was why I went to speak to Ricardo after the next CT scan and blood tests were done. I won’t go back into everything he explained to me back then, but it made more sense than what the Idiot Onc had told me in January, and as I knew I was about to see my new onc soon I decided to leave it for the moment.
The proper time to have done the post-op chemo would have been after the surgery in September. But as I had another one straight away in November there wasn’t time. And since all the biopsies had come back negative Idiot Onc said “it’s a miracle!” … but I really should have started back on chemo that week and THEN had the PET scan in March.
Anyhoo, no going back.
So far the anti-nausea stuff seems to be working. Only had a couple of queasy moments today, and even managed to go out for lunch with Susan (Pip) to try out a new Italian place across the street.
I’m feeling pretty zonked though. After lunch I took a nap and woke up in a panic two hours later thinking it was Saturday and that I’d forgotten to take Friday evening’s chemo pills!
If this keeps up over the weekend then I’ll be convinced this is a winning combination for keeping the nausea at bay. Honestly, last time I spent about four days just lying in bed feeling sick and moaning and not being able to sleep – awful.
As far as I know it’s the Platinum in the chemo that causes the super-sensitivity. There’s nothing I can do about that side effect other than be very careful (and thank gawd it’s not winter). So now we just have to get rid of “chemo arm”.
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Just about every IV chemo I have heard about causes that cold thing, except that it varies so no one knows how badly it will bother them. I dearly wish I could send you the shearling thong-slippers I just snatched away from my senile Maine Coon before he could pee on them. He likes soft fuzzy things to pee on.
I am now thinking an assortment of thoughts at you: microfleece, Polartec, microfiber comforter, flannel sheets…
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I’m glad you’re getting at least some of the side effects to be more manageable. But it still doesn’t sound like a picnic. (Well, except for the picnic. That part sounded good.)
Here’s hoping the side effects pass quickly. I’ll be thinking of you.
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I forgot to mention how much faster things go with the port. But it’s true.
I never had that cold thing at all, my most long-lived effect was super-sensitivity to smells. Which was too bad, as my roommate was addicted to the most obscenely perfumed hyacinth incense. I still get a bit gaggy when I smell it. Had to stay out of Italian restaurants altogether.
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The thing is … there are actually two different “cold things”. One related to the drug itself, the other to the manner it is administered.
With the first, one side effect of the infusion causes an oversensitivity to cold, affecting hands & feet and also making it very painful to drink anything cold (or even breathe in cold air). Not all chemo infusions cause this. With mine I have this particular side effect for about ten days, with it slowly diminishing each day.
The second “cold thing” happens when the infusion is injected into a hand vein. The “chemo arm” pain starts within about 20 minutes of the infusion and gets steadily worse over the next two hours or so. It’s as though the hand and arm “freeze” and then once they start “thawing” … OWWWW. Hurts like a bugger. For the first day I can’t even bend my fingers. This lasts about two weeks or so, but the hand doesn’t quite recover during the three week cycle, so last time I had to alternate hands for each infusion.
Right now I am on day six since the infusion and my hand and arm are still very painful. I also have to keep them warm. Meanwhile, the other “cold thing” is getting better.
So if having the port can get rid of “chemo arm” that would be great.
I haven’t noticed any hyper-sensitivity to smells.
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Having the port will indeed get rid of chemo arm entirely. You will be amazed.
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