My new best friend, Immodium.
Things have not been going well. I am seriously struggling with treatment right now, and at least one thing is certain – I do not react well to being poisoned. The last cycle (5th) gifted me with acid reflux and heartburn from hell, vomiting, nausea, and severe diarrhea, much of which went on for over 10 days straight. Rather than having the 6th cycle last week, I was put on IV fluids for a week because serious dehydration. My last IV will be today, after seeing my pain management person. Then chemo on the 2nd of May. I’m not arguing against being pushed back anymore, particularly because I won’t even consider doing Neulasta again, that shit damn near killed me.
The pain is back, in huge red letters. Butt pain, back pain, sciatic pain, abdominal pain. I’m told the abdominal pain is a result of the chemo, nothing for it except to keep taking morphine, and whatever else in order to keep the morphine down. For most of my life, I’ve usually had very little in the medicine cabinet. The basics, toothpaste, deodorant, bandages, Ibuprofen, and little else. Now, I’ve accumulated so much crap to take, prescription and OTC, I don’t have room for it anywhere. Stuff to keep things down, stuff to plug parts up, stuff to loosen up bits, and on and on and on it goes. You’ll find yourself laughing with a scary edge when you figure out how much all this crap is battling against the rest, and you’re just hoping it all somehow works. I’ve found that standard doses of anything don’t tend to work when you’re in treatment. Well, they don’t work on me. I was recently prescribed Zofran (Ondansetron), and a word about it – it’s for nausea, and the tablets are supposed to be placed on your tongue to dissolve. Once again, I find myself wondering what the fuck people were thinking when they came up with this hideous crap. It’s exceedingly bitter, which I might have been able to handle, but in back of the bitter is this disgusting, fake strawberry cream flavour, and together it triggers a gag reflex. Not the best thing in an anti-nausea drug. You also can’t get the taste out of your mouth for love or money. So, if I need to take it, I lightly crush it, toss it in and wash it down. You aren’t supposed to do that, but it’s the only way I can get it to work.
The bottom line? Do whatever you have to do to deal with any side effects you’re experiencing. If you’re the quiet, doesn’t want to impose type of person, learn to talk your head off when it comes to side effects, there’s little point suffering in silence.
The other major obstacle I’ve been dealing with is a loss of appetite and the attempt to find food which tastes like food. During the latest diarrhea/vomiting phase, I dropped down to 92 lbs, which is seriously not good. I had no appetite, and couldn’t find anything I actually wanted to eat, most everything tasted like cardboard. This is not at all uncommon in those in treatment. When you lose the ability to discern tastes in many foods, you have to do some experimenting with foods and spices. Foods need to be spicy enough that they taste good, and not so spicy as to cause you even more trouble. Right now, for me, taco seasoning is working, along with refried beans, mild chiles, and ground beef. I hope it keeps working, else I’m going to disappear in front of my own eyes. Anyroad, making things a bit more spicy or eating somewhat pungent things (pickled veg, coleslaw, etc.) might help your appetite to wake up and gain a bit of ground. There are also at least a couple of ‘standby’ foods for most people – usually comfort foods which will stay stable in taste. One of mine is chocolate Malt O’ Meal. I have always loved that stuff, and still do. When I can’t get anything else down, I can manage the Malt O’ Meal. Cooking for yourself can be a bit tricky at this point, as the smell of cooking food can suddenly turn revolting. If your caregiver or others can do some cooking for you, so you have things you can simply heat up, that’s ideal.
Right about now in your treatment, when you find yourself struggling with side effects, and feeling more than half past dead, it’s really important to remember your caregiver, even when all you want to do is go collapse somewhere and sleep for a week. You need to remember that seeing you in such a state is tremendously difficult for them, and their feeling of helplessness and anger over that helplessness will seriously blossom at this point. Or, they might become quite depressed, which can be dangerous and needs to be addressed right away. It’s easy enough to understand the helplessness, those of us in treatment, we feel that way too as we have little to no control over what’s happening to us. It’s hard to acknowledge that though, on both sides, but it’s important to do.
I think that’s about all today, I have to be at pain clinic and infusion today. There might be a late start tomorrow.
ETA: I have been told that the Zofran oral dissolve does not normally taste so hideous. That would be the chemo messin’ about. Also, forgot yet another fun side-effect: my nails are peeling. Yes, this can happen, and you can lose nails, too. Taking Biotin in the hope it helps. Also, if you’re in treatment, and get to deal with diarrhea, your Doc probably won’t mention the Immodium Protocol, and yes, that’s a thing to make it actually stop, not a Ludlum title. ;) Ask, and someone will locate it and print it out for you. I have a print-out, but back home just now, going to collapse soon. Actually ate quite a bit today, so that’s a hurrah.
I wish there was a better way, lots of supportive tasty titbits that you want to nibble on and hugs too.
Thanks, Jazzlet.
It really sounds like the side effects you get are particularly difficult to deal with. And I’m sorry about the pain being back. Hugs, plenty of sleep and lots of food that tastes like food.
That right there is an example of why I think the well-intentioned “eat this, don’t eat that” crowd needs to learn when to shut the fuck up about it. Some people undergoing cancer treatment will get to a point where eating and keeping food in their stomachs are challenges themselves. Not the best time to start a super-duper healthy diet, FFS.
*gentle hugs*
How many more cycles do you have to go?
For seasoning stuff, how well do you take herbs? They are usually benevolent for digestion and can add a lot of flavour, especially if you go for unusual stuff like lavender.
Nightjar, yep, I’m with you. I do not want people trying to tell me what’s best for me. I can figure that out on my own! And caregivers really don’t need to hear that nonsense either. They have enough on their shoulders.
Giliell, this Wednesday will be my 6th cycle, after that, two more to go. Oh, I cook with herbs constantly, and I love them. They haven’t presented a problem so far, and we’re far away from being able to garden, so getting fresh is difficult. I’ve been craving dill lately, because potatoes have gone tasteless on me, and I think some lovely, fresh dill in melted butter might go a long way in making them edible again.
I feel like Jazzlet. Best of wishes and an offering of gentle hugs, if they are wanted.
Again thank you so much for your insight.
Potaoes with dill and butter: now I crave them as well :D
Hugs
Uh oh
That’s a bad sign.
Just kidding. Dill is one of the few things I loathe with a passion. Homoeopathic amounts of it make me look for a napkin before I spit it on the plate.
Can you get frozen stuff? It’s much better than most dried stuff and a serious time saver. I fully admit to never buying onions and garlic in the raw but frozen and diced. This is due to me
a) hating raw onions almost as much as dill, but loving them cooked/fried/whatever
b) garlic often being musty and that can ruin your day
c) not having time
Oh, I’m so sorry… words can not convey. Two more treatments after this one? You are getting closer day by day. Hooray for that, at least.
What you say about just not being able to eat certain things is something we had in my family. When my father was going through treatment my mother desperately tried to keep weight on him by always serving desert. He tried so hard… but in the end he just couldn’t eat it, it was not the right thing for him at that time. The only one who gained weight from all the cookies, cake, ice cream etc. was my mother. I think it also made her feel like she was doing something; that was a hard time for all of us but especially for her. All that baking helped her in some way, I do believe.
I send kind thoughts and hugs to Rick as well.
Craving dill, a bad sign?? How can you, Giliell. Next you’ll be informing me potatoes are fruit of the devil.
All joking aside, *fiercehugs* for you and for Rick. Best of everything.
Please just eat whatever you want, whenever you want and as much as you want …
Raucous Indignation has the best advice.
And I like dill. In fact I think the only herb I can’t stand is cilantro, but my mom loves it, so there’s plenty of it in the garden and I had to learn to cook with it. There’s also plenty of rosemary right now, I love it.
Butter. Lots of butter. I love butter. Butter on everything.
*hugs*
I’m sorry things are so rough and I’ll keep good thoughts that things go well today.
I wish I wasn’t an atheist just so I could pray for you as I don’t know anyway I can help.
Oh, Caine. I wish I could see you in person to give you a big hug and cook you some meals with all the taco seasoning or dill your taste buds desire so that you and Rick can rest together.
And, I want to thank you so much for writing your chronicles. I was so far away from my mom when she was in treatment, both physically and relationship wise, and she’s such a stoic, that I feel from reading your experiences I finally get a glimmer of insight as to what she was going through. Just… thank you.
Huh. The Cheshire Caine… disappearing, with nothing left but the snark.
Like the other commenters, I have nothing to offer but good wishes (as if that’s any help). At least you don’t have ants in your throat, but at this point it sounds like you’d probably make that tradeoff if it were available.
When I can’t get anything else down, I can manage the Malt O’ Meal.
I probably should have mentioned this before, in case you don’t already know: if you are throwing up, eat applesauce. It’s the only food that tastes pretty much the same coming back up as it does going down. That can be useful. The pectin also buffers the acidity in a stomach pretty well.
Thoughts and more thoughts!
My warm and soft thoughts for you and Rick. I hope that it’s possible for things to go well and they will go well.
Hoping that you make it to the end of the treatment cycles intact. Virtual kitty hugs sent.
Thank you all so much. Just got home about 10 minutes ago. Saw my pain manager first, oh, and it helped so much. I don’t have to explain anything to her, she knows, so I was sent home with my regular morphine and morphine ER. So, the pain will be under control, a huge YAY for that one.
I have a print out of the Immodium protocol, to finally stop this damn diarrhea, it’s driving me crazy. It’s very easy to understand how people used to die from it. I may be put on another week of IV fluids after chemo on Wednesday, because my blood pressure keeps dropping, and only bounces back after hydration.
And I love and adore Dill, I love everything about it. Coriander leaf (Cilantro), ugh, tastes like soap to me.
Don @ 17, no, I’m not quite ready to make that trade. I’d feel too sorry for the ants. :D
Applesauce! Duh. It’s on the list.
I’m going to go fall into bed, and once more, thank you so very much, you all provide more support than you realize, and I am beyond grateful for it.
Hi Caine: I am SO with you about taste. I have lost the ability to taste salt. Everything is so bland. I bit into bacon the other day and it tasted like…..nothing. BACON! I CAN’T TASTE BACON. On the other side -- I can still taste sweet -- so things like cereal in milk taste normal for now. Coffee is still coffee. Pizza is a melange of cardboard covered with a cardboard sauce.
I agree with Raucous Indignation that you should eat whatever you want. Another patient constantly shares her list of “foods to avoid because they will give me more cancer.” I’m sorry -- but if I want a Chocolate Sundae I’m eating a Chocolate Sundae. Maybe two of them if the mood strikes me. Keeping weight on is a challenge -- especially with your horrible side effects -- so I think you should just eat what you want. and what you are able.
Victoria
Victoriajoy:
All my sympathies! It’s such a shock, isn’t it, going to eat something, anticipating all the normal tastes and flavours, and you get nothing. It’s easier to not eat, then trying to choke something down which has no taste at all. I can still taste sweet too, but my tolerance for salt is very low now. I’ve loved salt all my life, put it on everything, but now, no. I’m over sensitive to salt. It’s really difficult for people to relate to the no taste thing; it’s one of those things you have to experience.
Oh, I’m eating what I want. That reminds me, I need to gorge on ice cream today, because chemo is tomorrow, and I’ll be cold sensitive again. (Lately, it’s been ice cream sandwiches and orange push-ups).
Oh gods, save me from the “x will give you cancer!” people. So much bullshit, with a generous helping of magical thinking. And yes, if you want to eat Sundaes all day long, you should. It gets too easy to stop eating when you’re in treatment, so anything which whets your appetite and gets you going, it’s good. I’m much more concerned about gaining weight and at least stabilizing it to where it’s not a danger point. I’ve started drinking chocolate milk, because that will help to put some weight on if I can drink enough of it. It’s incredibly difficult to find whole chocolate milk, with all the fats included, most of it is skim, 2%, fat free, all that. That’s not helpful.
I’m thankful beyond measure that tea is still tea; if I lose that, I might go all homicidal. ;)
Caine @ 23
Would it work to add two tablespoons of cream (30 -- 45 % fat) per a cup of chocolate milk? That should bring the fat content to the level of whole milk.
I hadn’t thought of that, Ice Swimmer, but yes, I think that could work. I do have a source for whole chocolate milk, but if it disappears, I’ll adopt your suggestion. Thanks!
Best luck for tomorrow, Caine, I’ll be thinking of you and hoping all goes well.
As for food, vegetable soup and bread with cheese was for a long while the only things that tasted well to my mother according to her. Everyone is different and everyone will have to find that weird thing that will keep them from disappearing, it varies so much from person to person.
Thank you, Nightjar.
Yes, all that! It’s another reason there simply isn’t any good dietary advice to give to anyone in treatment. What tastes good to one person will have no taste to another; to yet another person it might be vomit inducing. There’s simply no way to tell, and there’s no way to predict, in any way, how side effects will act on any given person.
Raucous Indignation was absolutely right, you eat what you want to eat, when you want it. Foodwise, things seem to keep shifting on me, so there isn’t even much stability during treatment. I had been drinking this powerade stuff, to keep my fluids and electrolytes up, and had to give it up. The ‘Hawaiian Punch’ flavour went first, turning intensely sour, and I lost my last ‘good’ flavour, orange, several days back when it went weird tasting.
I know people have good intentions, but honestly, I just want to smack anyone who starts talking diet, because they don’t have the slightest idea.
Since I switched from cow milk to soy milk, my favoured brand contains soy and water.
And it tastes just about like that. I’ve been adding Nesquik.
Oh, Nesquik. I practically lived on that stuff as a sprog. I can’t stand soy milk, so that’s out. I honestly can’t stand to drink plain milk, either. Chocolate milk I can cope with, but it was a bit strange -- it doesn’t taste sweet at all to me now, and the chocolate flavour is on the faint side. As long as I can handle it, I’ll drink it, because I am about desperate to put weight on.
Hmm, now I’m thinking about Malted Milk, I loved that when I was a sprog too.
Do you get malt loaf in the US? A dense chewy, yeast raised tea bread? Made with malt (duh), good eaten with butter as is or toasted. it might work what with being malty and all.
I don’t know if you are getting this, but I find when the pain is making me nauseous I can’t even think about what to eat. I’m lucky in that usually if soething is ut in front of me I’ll be able to eat and even enjoy it, but I can’t envisage enjoying anything. It would certainly make finding food that still feels edible to you harder so I hope you are not getting it. Enjoy the icecream!
I hope everything goes smoothly tomorrow.
Jazzlet, that’s a no on the malt loaf, but it sounds delish. I can probably find someplace to order some. Gotta love the ‘net. Yeah, if I’m nauseous, I can’t think food at all. I have to get it under control before I can eat. The nausea has not been a problem the last few days, and that alone makes a big difference. Of course it will be back after tomorrow, but I have my dex all ready, and I have the Zofran and Dramamine to keep it all under control. One thing I’ve found which makes a difference to me is to take the anti-nausea stuff before you have a bout of it. That allows me to be a bit ahead of the reactions.
The classic UK manufactuer of maltloaf is Soreen. Another thought I had along the malt line is malted milk biscuits, good ones are very malty, you can get them plain and milk chocolate topped. I like dunking them in coffee, but that’s not for everyone.
The taking of pain killers before the pain hits is something I have had to learn to do, it will kick in even if I wake pain-free and it defnitely works better that way. It’s just hard when you want to minimise your painkiller use especially the opioid ones. Ah well at least they do work most of the time.
The SO is in the kitchen making some sauce for pasta, heavy on the garlic.
I love garlic.
luuuuurve gaaarrrlllic
(it might not go well with chocolate milk)
so of course I googled …
…
there are recipies
I have had a garlic parfait, and garlic ice cream, and I also put garlic in my chocolate cheesecake, and no one ever notices until I tell them. It is The Best.
Also, if malted milk is anything like Milo, mm-mmmm. I get mine imported from Australia, but that stuff is something close to heaven.
♥
Before her cancer diagnosis, my mother had been basically without a sense of smell for over a decade. Sense of smell came back in time to really work against her when we were struggling to get calories and protein into her. Figures. Appetite is such a fleeting thing, something I never would have believed when I was a teenager.
I hope things are going better for you soon. Is there anything else they can give you for nausea? My mother had Zofran from the start (appetite problems preceded chemo) and then Compazine prescribed before she started the chemo, though the problems she had were more about her appetite disappearing than perceptible nausea as such.
rq:
I shall check that out!
ledasmom:
Oh yes, it is. That’s a good reason to have very small servings of things available, if your appetite suddenly shows, you can manage to cram a little something down. Fruit cups, or fresh fruit is good for me, and it might not be the most nutritious thing around, but anything is better than nothing.
I have the standard dexamethasone scrip, and more Zofran than I’ll ever take, and otc dramamine works well for me. The nausea really didn’t show up until after the heartburn/acid reflux last cycle. It’s now a habit for me to take a dramamine before I eat, which seems to work well enough. I’ll be loading up on everything today, because I have no idea how the side effects are going to go this time.
Jazzlet:
I have had to forcibly pound this into my head. With the back pain, I just waited until I couldn’t take it anymore, then took meds. Now, I take 15mg morphine ER (extended release) first thing in the morning, and again right before bed at night. I have 15 mg morphine for breakthrough pain. I just took my ER, even though I don’t have any pain at the moment. You have to get into a habit. (yeah, yeah, no pun intended!)
I resisted this for a long time, and because of that, dealt with much more pain than I needed to -- taking the pain meds on a schedule helps tremendously. The extended release takes much longer to kick in too, so it’s not much good if you wait until the pain hits. Having the morphine ER has cut down on the amount of regular morphine I was taking, so that’s a plus.
Caine,
It’s good. While it is understandable that macronutrients are your great priority now, do not underestimate the importance of the little micronutrients that fruit is so rich in!
Nightjar:
Oh, I don’t! My oncologist wants me to eat protein, protein, protein, but I’m more inclined to fruit/veg than meat right now. The cotton mouth I get these days is awful, so I always have grapes around, and keep some by my bedside every night -- when the cotton mouth wakes me, I pop a grape and go back to sleep.
And when I really don’t have much of an appetite, I can still manage peach slices, or plums and apricots. Fruits are one thing which have stayed stable in taste. Right now, protein-wise, I’m just going with a lot of beans, soup, baked, refried, all that.
Just chiming in with sympathy and Internet hugs for you and Rick.
It took an early-morning ER trip to convince my mother that it is all right to take her pain meds when she has bad pain (gall bladder/stent related, apparently), partly because they gave her dilaudid when she was in the hospital acutely ill and she didn’t like the effects. It wasn’t until then that I realized that she didn’t know how different the effects of something like vicodin taken orally can be from dilaudid through an IV -- she simply hasn’t been ill often enough! I live with a husband who’s a notorious klutz and also gets gout and kidney stones, which does tend to give one a working though not first-hand knowledge of the matter. That kind of felt like a big incompetent moment from me, right there.
It was also weird getting home after three weeks and explaining “Well, she has pancreatic cancer -- had septicemia when she went to the ER back before I got there and a blocked bile duct -- we went to the ER a couple times while I was there and drove to another hospital in the middle of the night once for a procedure -- stayed to get another procedure done -- she’s doing great!” I, you know, had not been thinking about how all of that sounds, but really it was all pretty normal, of its sort, and the St. Cloud hospital is a lovely place to stay for a few nights if one has to.
Just dropping in to wish you the best, Caine.
Something of a “cancer scandal” in the UK right now. The NHS has a good screening programme for breast cancer -- all women between 50 and 70 are supposed to be offered screening every 3 years. But it turns out that a batch of them did not get offered their last screening due to an IT fault, and no-one noticed for 9 years. Up to 270 premature deaths are estimated to have occurred as a result. I’m inclined to blame all the fucking about with the NHS, trying to make it run on “market” principles, that has taken place over the past 20 years, but if that is true, I’m sure it won’t be admitted. Still, at least we still have a single provider, (mostly) free at the point of delivery system. Cancer can still screw your finances -- full sick pay doesn’t last forever, and if you’re off work long enough your job can disappear altogether -- but at least you’re not being bled by “insurance” companies, whose only real interest is in how they can avoid paying out.
just wanted to say i’ve been following and sending all the love i can. also, although i’m sure you’re getting tons of advice and stuff and just want to slap people suggesting ways to help, one of the sources of protein that actually continued to taste ok (and stay down) during my chemo rounds was Morningstar brand veggie sausage. it’s got soy and eggs and gluten in it so if there are allergy considerations or drug interactions it’s a no-go, but there were def days where that stuff was ALL i ate. continued strength and kickassness to you.
KG:
Jesus wept. There’s no compensating that one, either. How do you compensate anyone for a lost life, lost time? It’s really hard to believe 9 years went by with no notice. When it comes to money, it terrifies me to think what I would do if I didn’t have good insurance -- there’s no way I could even begin to cover the cost, I’m already over the $100,000 mark, and a long way to go. I wouldn’t even have long enough to live to pay off that kind of debt, and it would crush us. The only real option here, if you don’t have *good* insurance is to die.
Simple Desultory Philip:
Thank you! And thanks for the suggestion, too. Some days, it’s just so damn hard to eat anything at all, I’m willing to try just about anything these days.