© C. Ford, all rights reserved.
I am in full chemo brain space cadet mode, so this post will most likely be on the disjointed side. As of my last chronicle, I have been struggling with the cumulative effects of chemo. My 6th cycle was pushed back by a week, and I went in for IV fluids four times before that cycle. I cannot even begin to say just how much that helped. It upped my energy and my appetite, and I need all the help I can get with the latter. On Saturday (the 5th this month), I went for a very short walk. As short as it was, I could feel that I was pushing things too much. I ended up going into full collapse all of Sunday.
One of the more terrifying effects of chemo is getting hit with this overwhelming weakness. You find yourself unable to walk all the way across your dwelling without having to stop and rest. The idea of walking two blocks without resting several times is impossible. It’s difficult to describe just how bad it is. Normal movements are taxing to the point you can’t finish simple tasks like folding clothes or washing some dishes without taking breaks. The worst of that hit me back when I did the Neulasta, but its been lying in wait, and hit again after the short walk. All of which brings me back to hydration. After I had the four pushes of IV fluid, I felt close to normal. What used to be normal. Rick emails me every day while he’s off at work, to check in and see how I’m doing. One of his emails included this line: You seemed way more alive last night than you have in a long time! I sat for a long time, staring at that, overwhelmed with conflicting emotions. It drove home just how close to dead I’ve been, how…faded. It hurt like hell too, because it was a very sharp reminder of just how fucking rotten this has been for Rick, how difficult it is for him to see me mostly gone, and wondering if I’m still there, buried under all the side effects. You can’t help feeling like you’re letting everyone down, including yourself. It’s very difficult to engage mentally and emotionally when you can barely bring yourself to move physically.
I’ve been steadily downhill since the walk, so Rick called infusion yesterday to set up fluids for Wednesday, but they said they could fit me in that afternoon, so off we went on Monday for another IV push. I could easily tell I was once again very dehydrated, because I didn’t have to pee. If my fluids are good, I have to race to the nearest lav as soon as I’m unhooked, and there have been times I’m off with IV pole, couldn’t wait. After the fluids today, we ran a few errands, and Rick once again remarked that the difference after I get fluids is night to day. For the last two cycles, I’m going to set up appointments for fluids on the Monday and Wednesday after my pump comes off. If you find yourself dealing with the terrifying weakness, you might want to holler for getting a series of IV fluids after a cycle.
We were sitting in the car in the market parking lot, having a sticky chocolate break before doing the market stuff, and I was telling Rick about how I had been feeling, that it wasn’t just the physical shakiness, which is still with me, but this loud, internal shakiness, all fizzy and overwhelming. Right away, he nailed what it was like – a really bad hangover. I haven’t had a hangover of any kind for a very long time, but the recognition was instant, it is just like that, the same dehydration and imbalance you get from drinking too much, when all you’re really capable of is sleeping it off. Chemo is mostly all “trying to sleep it off”, but that doesn’t work for chemo like it does for a hangover. This is not a matter of not having enough fluid intake, either. The chemo and the side effects dehydrate you to a point you could not drink enough of anything to bring you to proper hydration. I’m drinking something or other pretty much all the time, and still ended up like a walking piece of brittle kindling. Being dehydrated can also make your blood pressure plummet, so if you are getting consistently low reading like I was, look to get yourself properly hydrated, and your blood pressure will normalize quickly.
Dehydration also makes some of the side effects worse, like the skin peeling. It’s bad enough when you’re plump with fluid, and a nightmare when you’re all dried out. Scratching an itch will end up with your skin splitting open. I think that’s about it for now, my brain is jumping ship, and I need sleep. As always, if I have more to add, I’ll edit sometime today.
On a food related note, if you work in a hospital cafeteria, making the food and all, for the love of humanity, do not put effing cardamom in pumpkin pie! Also, if you grind the seed pod along with the seed, don’t ever touch the spice again. This comes up because last cycle, I was hungry, and Rick wandered off to the cafeteria to find something for us to snack on. We ended up with pumpkin pie that tasted like Vicks. Cardamom is a lovely spice, but if you don’t know how to use it, it’s a disaster. Chemo messes with your taste enough, getting a slice of Vicks pie doesn’t help. :D Speaking of, check out this Vicks ad, my my. (I did make sure it was that pie, not me. Afterwards, at the market, we bought a pumpkin pie, and it was just fine. I brought home another one yesterday. Turns out that it’s an easy thing to eat during chemo, and it’s cooling without triggering the oxali cold sensitivity.)
Water is life, and if you’re undergoing chemo, it doesn’t do to overlook the importance of it.
ETA: I’m actually cleaning today! And doing some laundry! Never thought I’d be so effing happy about that. Another ETA: If you’re in treatment or a caregiver who makes appointments, you do not need to go through any hoops to get fluids – just call infusion directly, and your grand and wonderful nurses will set you all up.
Seems like cancer is capable of sucking and blowing simultaneously.
I wish I could do something, but since I am not a physician and neither am I playing one on TV, there is nothing I can do. Just one idea to bounce off the wall:
What did/does your physician recommend vis-a-vis drinking isotonic drinks? Normal drinking water and most lemonades and fruit juices are actually hypotonic (once the sugars are metabolised). Of course you mentioned diarrhea several times and your colon is now temporarily a few inches shorter, so you evidently have problem with water resorption and IV might be the only feasible way to keep you hydrated. But maybe adding a pinch of salt or a piece of magnesium supplement to your drinks would help? Or alcohol-free beer, allegedly it is isotonic too (and for me it quenches thirst after work much better than water or juice).
Charly:
Oh, I’m not overly fond of alcohol-free beer. Rick likes it, and he finds it better for thirst like you do. Most of the stuff I’m drinking has electrolytes, potassium, sodium, minerals, and assorted vitamins. I have powerade (like gatorade, but better tasting), pedialyte, vitamin water, Boost, and a bunch of other stuff. And of course, water. I’m pretty much attached to my water bottle anymore. Just for taste, because I like it, I drink orange juice with grenadine fairly often. The Co-op we recently visited has some fantastic grenadine, and I adore pomegranates.
These chronicles are so valuable. The more you write, the more I can understand what my father went through. I can imagine it will also help anyone who knows someone in treatment or actually goes through it themselves and that would be nearly everyone.
What you say makes so much sense but is not all that obvious or at least is not to me. That is brilliant, that now you’ll just be getting IV fluids on a regular basis with treatment, and here is hoping it makes finishing up the treatment more bearable for you both.
Thank you so much, Kestrel. That’s the whole point of doing these, to hopefully help other people who find themselves thrust into cancerland, in any capacity.
Now that I think on it, it seems like the further you go with chemo, the more difficult it is to actually recognise dehydration. You get focused on pain, weakness, exhaustion, and other side effects, but it doesn’t connect with “water, duh” for some reason. Then you find yourself looking in the mirror, and you can see the dryness. When we went in to register for my first IV fluids, the woman checking us in recognised us, but was asking me if I needed a wheelchair, I looked that bad. I definitely don’t want to hit that point again.
I’m still a ways from the radiation & xeloda, so I don’t know if this will be needed then too, but if it is, I won’t hesitate. An hour’s worth of fluid can keep you going for days, with a good level of energy, as long as you don’t get silly with it.
I did not know that about pumpkin pie. I’ll pass that along.
Raucous Indignation, it’s really nice when you can’t do ice cream because of the oxali. It’s even better with whipped cream. :D
I’m sorry to hear that dehydration has been so much of a problem. I’ve seen the radical difference that IV fluids can have with one of our cats who needs an infusion every five days. It is like night and day. I’m fortunate in that I can do the fluid treatment myself at home, I hope it won’t be too encumbering for you to get treatment often enough to enjoy things as fully as possible with the rest of your treatment.
Brony:
Yeah, I’ve done sub-q fluids for my animals at home, too. It would be nice if I could do that for myself, but it’s not so bad going into town for it, it’s well worth it. Thank you!
It must feel good to get some things done, but I hope you don’t overdo it today.
Pre-booking IV appointments is a brilliant idea because when you’re dehydrated your brain has trouble making connections and recognizing problems. Also, symptoms like pain and nausea make it hard to think about anything else except pain and nausea.
Voyager, no, I won’t overdo. It’s not like I’m going to make much of a dent in the mess of my studio, or the laundry pile, but it feels so good to just get something, anything, done. It’s really bad for you, not being able to do anything, just sitting like a lump, you just start to spiral down because you can’t do anything, and then you just stop trying.
My back is a bit pissy, but that’s normal, and having stuff like a clean desk, clean bedding, and a couple loads of laundry done feels like such a major accomplishment, and I know how silly that sounds, but it makes me feel like a person again.
Caine it really doesn’t sound silly to me, it’s very much how I feel a lot of the time as the combination of pain, pain medication and depression really rob you of your ‘get up and go’. Which is why I was chuffed enough about doing some laundry and drying it outside to put it in TNET. I would be surprised if you weren’t at least a little depressed at this point, just because not being active is depressing, so yes take pleasure in having done what you can. And try to remember everything you do too, it’s easy to forget the little pottering jobs, like in my case looking after my Stephanotis plants.
I hope you manage to keep a little better hydrated, even with out the IV’s, but well done for thinking ahead and booking them in advance even with chemo brain!
Jazzlet:
That’s great! I don’t think I’m up to line drying yet, but I am so glad I’m not alone in this.
@Caine
I recently worked as a janitor at a drug rehab facility and asked if sub-q fluids we’re used on people. I got the strangest look from the nurses at the nursing station. I guess the answer was no. I wonder why.
Brony, I don’t know. Raucous Indignation may be able to answer, if he stops back by, he’s an oncologist.
Oh my, the Vicks pie made me laugh, sorry, that doesn’t sound like it helps at all! I’ve had that experience once too, not with pumpkin pie but with a sweet called Queijada that I’m pretty sure is not supposed to have cardamom at all, but I guess someone got “creative” and overdid it. It didn’t occur to me at the time, but Vicks pie is a perfect description of what it tasted like. :D
***
Not silly at all, my mother is the same, she gets so happy when she’s able to do that kind of stuff. She’s always with a smile on her face now when she feels capable of cleaning and doing some laundry on her own. And yes, she often pushes things too much and regrets it later. That’s also one of the things that worries me whenever I have to leave her alone and I know she’s feeling better, I worry that she will overdo it as usual and end up collapsing for a couple of days. But I think she’s learning her limits now, it happens less and less frequently.
I hope the hydration keeps working and helping you pull through these final chemo cycles. *hugs*
♥
Go laundry. It always feels good to be able to do something with visible and near-immediate results. Dishes aren’t bad in that respect either, but I prefer laundry to dishes.
Enjoy your clean socks, and hooray for hydration!
*hugs*
Nightjar:
Oh no, another victim of Vicks pie! That’s just one of the weirdest tastes ever. Queijada looks and sounds delicious! Nothing like a sweet that smothers your face in sugar. :D
I was well behaved yesterday, I was asleep by 7pm, and it was the best sleep I’ve had for a long time. Work is its own reward. I’m going to get a bit more done today, then maybe get a bit of painting in.
rq:
Me too. I’m sticking with a bit more laundry today. :)
I haven’t commented on your cancer chronicles before, but I’m trying to go back and read them all. I think the only one I read right when it came out was the first.
My empathy goes out to you, though I don’t know what else I can do from this distance. I sympathize on the Vick’s Pie. That sounds pretty terrible. I had heard previously that chemo messes with one’s sense of taste fairly often and sometimes fairly hard.
Whatever’s going on for you, I’ll be out here reading, listening. Hope you get another walk in soon.
♥seedy
Thank you so much, Seedy. ♥ Don’t try to take it all in at once, it’s a lot, the chronicles. When I started, I really didn’t think I’d have that much to say. But right now, I have to lay down to get my misbehaving colon back on the inside. It’s just fun every minute!
Oh geez. I missed this until just now, in part because the last few months were spent caretaking my spouse’s uncle and it wore us all down. Esophageal cancer, in his case. Fuck cancer.
When I was caring for my best friend (wildly aggressive cervical cancer: fuck. cancer.), the only thing we really found that worked for keeping her hydrated enough was IV fluids. Loss of appetite seemed to inhibit her ability to drink much at a time, too, and honestly sometimes it was just too exhausting, regardless of how tasty the drink option was or how readily available we kept it. People don’t think about drinking as being tiring until they’ve experienced or seen that kind of fatigue. I’m really glad you’ve got a plan for keeping your fluids up!
Each type of cancer is different, each person is different, and my experience is only as a caregiver so I doubt I’ve got much to offer here beyond my heart, but if you need somebody else rooting for you and swearing a lot in the general direction of cancer, I’m your enby. ❤