Let’s hear it for Sister Morphine.
The photo I couldn’t upload on Wednesday.
Home. When you show up for your labs/oncology visit/chemo, this is something you don’t want to hear: “Your labs are terrible! There is no way in hell you’re getting chemo today! You need to be in hospital.” :Considers running away again: “I’m going to stop meeting you like this if you keep putting me in hospital.”
Yes, I was very dehydrated, severe diarrhea for 12 days will do that, and I am not a good fluid intake person. The main trouble was that my liver enzymes were through the roof. Uh oh. My oncologist pinned his hopes on a possible bile duct stone, as I’m lacking a gallbladder. I doubted this was so; outside the constipation/diarrhea combination, I had no abdominal pain. Turns out this was so, a scan showed everything normal in that area. So, if this is chemo induced, I get kicked out of the trial, and switched to ‘traditional chemo’. I didn’t want to just do that, and neither did my oncologist, because there could be a couple of other factors: my obviously over the top reaction to the miralax, and the acetaminophen in my regular pain meds, which was quite increased from normal dosage due to very increased pain.
The GI doc and a couple of others who came to visit on Wednesday kept asking me about acetaminophen, specifically Tylenol, like I swallowed half a bottle every day for a hobby or something. So for now, I’m not taking anything acetaminophen based, gone over to morphine, my liver count was trending down very quickly, and the diarrhea has finally slowed down, so next week I’ll do chemo infusion two, just the same, stay off the acetaminophen for the following two weeks, then we’ll see what the labs say. Hopefully, I’ll be able to stay in the trial. I think I’ll probably win ‘exasperating patient’ of the year.
What is clear is that I’ll have to do all the stuff right from the start, low fiber diet, lots and lots and lots of fluid intake. My ostomy end is still not working, so I’ll need to see my surgeon again, too. I’ll admit to being somewhat afraid of the latter, because if I hear ‘hospital’ again in the next week or two, I might start screaming. I hate being in hospital, but I will say, for someone who hates it as much as I do, the nurses are always happy to see me, because I’m not the miserable asshole with them or any other medical folk. I always engage with them, and turn my humour to ‘extra high’, and I never ever have cause to complain about my treatment.
On Wednesday, I didn’t have my MRI scan until evening. Pick up arrived around 6 pm or so, and when I wandered out to the hall, there was a large man, dressed all in black, bristling with gear, looked like a cop, which took me aback a bit. The gurney was black, with enough straps to please a mad insane asylum director. I looked at him, looked at the gurney, and said “I wish I’d known, I would have put on my super villain outfit.” So, I got a ride in an ambulance to the MRI center. My first time in one, kind of interesting, and a nice break from hospital boredom. I was happily drugged for this scan, so I was able to lie still without much pain.
Odd things: my veins, which have never been what you call cooperative (I’m a roller), seemed to go on full strike on Wednesday. In the morning, getting my labs done, the needle goes in, nothing. The needle gets moved about quite a bit, nothing. Took about 20, 25 seconds for blood to show up. We had a good laugh about that, because it was really fucking weird. Later, in hospital, it was one blown vein after another. Much much later, talking with my oncologist, he was annoyed my port wasn’t used. So, I enquired about that (I had completely forgotten about the port myself.) One of my nurses told me they stopped using ports, because when they used them for everything, labs and IV, the rate of infections went up, and they got all the blame for it. Naturally, they weren’t happy about that, so they just quit using them. Can’t blame them, I wouldn’t want to blamed for that either, especially when every precaution possible is taken.
Thursday was one very long day, into evening, of sit, wait, and try to deal with deadly boredom. I wasn’t released until late evening, and I had to fight a bit for that, so by the time we got home, it was very late, and I swallowed some morphine and collapsed. Still not feeling great, but I’d much rather feel lousy at home. Jayne gets seriously unglued when I go missing, so I had to spend some time with him; he thought I smelled funny. The rats were all “oh Great Rat, serving wench, you are home! Feed us all the good things!” Grace and Vala just stared at me, then the empty tea dish, glaring at my compleat nerve at not being around to make sure they had their tea and pastry.
So, things should get back to normal here, for at least a while. One lesson learned: even on a routine visit, toss the packed duffel bag in the car, along with the secondary computer, cords, all that crap…just in case. Normally, I’d just toss it all in the car and leave it, but we’re still in below zero temps here. That can’t go away soon enough.
So relieved your home !!
“low fiber diet, lots and lots and lots of fluid intake”
sounds yummy
welcome home
Thank you. Everything is so much more tolerable when you’re home.
Glad to hear you are back home, and that they seem to have found the cause of the problem.
Glad to read that you are back home, and I hope they have solved this problem.
I’m so glad you’re back home. I guess the monster dogs were more than happy to have you back.
You do play this on maximum difficulty setting, right?
I am glad you are home. Fingers crossed for this getting sorted.
__________________
My father is bad at keeping his fluid intake at appropriate level, so my mom gets on his nerves constantly by reminding him to drink. Not suggesting anything :).
I too have an experience with difficult veins from my childhood. I was under 6 years old but I still remember how the nurse was poking my wrist with a needle and twisting it around like a gear shaft to no avail. I was afraid of needles for awhile after that and still do not particularly like to give blood for test every six months.
Thank you, thank you.
Giliell:
Apparently so.
Charly:
That’s a good way to describe it, it was just like that!
BTW, one way people keep track of their fluid intake is to have a target amount and place that somewhere you can see.
My grandpa would go to the cellar in the morning and bring up two 0.7l bottles of water. Together with the tea and coffee the two would make sure they drank the two bottles.
I will offer hugs if you want them… whew, glad you are home! And those pictures -- ! GOOD. And thank you so much for taking out the time to write all this down. Wow. What a journey you are undertaking. I am so relieved to hear you are home and (relatively speaking) OK.
The Partner is particularly good at getting difficult veins: there is a technique you can do with ultrasound, the Partner is incredibly skilled with this, and as a result people now request the Partner to do their needle sticks. Some even come in ONLY on those particular shifts, just for that very reason. So I know from that, some people just are really hard to get an IV on, all the way from little kids to 100-year-olds. The Partner says it’s exasperating when a nurse who is no good at sticks, does it over and over and over before asking for help. FINALLY. And there the poor patient is, with a million extra holes poked in them for no reason. Gah. Sympathies!
Thank you. I’m about to go and mix up some diluted orange juice, and start drinking. I’m really tired today, just from not getting enough sleep, but the IV fluids made a great deal of difference in my energy level, so I know I cannot neglect the fluids, and I’m just going to have to get into the habit.
Kestrel, yeah, I rarely have a nurse who sucks at needle sticks, it’s only happened a couple of times, and they’ve gone and gotten someone else right away. It’s an annoyance to have uncooperative veins, and mine are very small too, so they are just a pain all the way around. For all the difficulty, I didn’t bruise up on either arm though, whereas I’ll develop a massive bruise from a classically smooth needle stick. Go figure, contrary all the way, me.
Glad to hear you’re home again and in a better condition.
Re difficult veins:
Back when I had had an appendectomy (which was much more of a short-term thing, one stab and one slice by the surgeon and less nasty poisons, nothing like you’re going through) and was dehydrated as hell they had to wait for an old and experienced nurse to come to work to be able to find a vein to stick the drip into.
So I guess that dealing with difficult veins is a) difficult and b) a thing they can’t fully teach in the school, the skill to do it comes from experience and even then some people can do it better than others.
Ice Swimmer:
It is, and some people are extraordinarily good at it, whereas most people are simply competent at it, which isn’t to be sneezed at either, but it’s great when you get someone who is a right artist at it.
The first time I ever needed IV fluids was when I was an intern. I was profoundly dehydrated, and my chief resident sent me to the residents clinic to get started on fluids and be admitted. My veins are usually ropes, but I was dry and orthostatic as shit and all my hand and arm veins were flat and collapsed. My skin had the texture of sand. I had almost no capillary refill. The nurse I usually worked with in clinic stuck me three times before she finally got the IV. I was heckling her the whole time which definitely wasn’t helpful. Finally, I laid flat on the exam table and hung my right arm down. What little plasma I had pooled in my hand veins and, kneeling on the floor, she got the IV running. Ahhhh!! IV fluids are the greatest thing in the world when you are hypovolemic!!
A thing about veins. My mom and aunt were both nurses in the day. When my mom made her last visit to the hospital, she couldn’t get any food or fluids, as she had difficulty swallowing, so they put an iv in. Or tried to. She too had small rolly veins.
My aunt was getting increasingly frustrated, so she got a towel and soaked iit in warm water “To bring up the veins” she said. She put it on my mom’s arm , and it worked. The phlebotomist who came in had no trouble giving her the iv, after the previous nurses failed. Of course, you have to be careful not to burn the person, so you don’t put it on unconscious or uncommunicative patients, or diabetic patients, but my mom was none of those. Maybe that can help next time.
OMG I ♥ you and I’m glad you’re home!! I hope all the badness will be under reasonable control from here on in, all the fierce for you.
Thank you, rq, I can use all the fierce I can get! ♥
Raucous Indignation, yeah, being dehydrated does not help.
Cherbear, thanks, I’ll keep that in mind.
Caine, I don’t know what the experience has been in Bismark, but we use our patients ports for everything. It’s the best most secure IV you could have, and -- much more importantly -- it spares our patients so many needle sticks. If your port has good blood return, they should be able to draw your labs off of it too.
Raucous Indignation:
Yeah, that’s my Onco’s opinion too, but given all the trouble I’ve already had, I’m not willing to do anything which would even slightly increase the chance of infection, because I’d be back in hospital again. And I don’t mind needle sticks, they’ve never bothered me.
Glad to hear that you’re home now, and that they (and you) seem to have a handle on the issue.
Hurrah for being home!
I am glad you are home and hopefully the issues are diminishing for you!
Fluid intake is a huge problem for me as well, as I do not really have a sense of thirst (especially problematic in summer working in a glas building and protective gear…). Having bottles with a date written on them (in large letters and wonderfully obnoxious colours) really helps me.
Fierceness! Anger! Love!
(Maybe te post is weird. It is late here, sorry)
So glad to hear that you’re home.
If the fluid demands are daunting, jello and popsicles might be helpful.
I never much minded needle sticks either. I’ve taught dozens of trainees to draw blood on me. The first time was in a practical lab in med school. I was the only one in my lab group who had ever done it, so I demonstrated on myself and then let my seven classmates all practice on me, at least one time each. We didn’t run out of band-aids.
@23 Voyager, yes! The best Popsicles are home-made ones that are made out of Gatorade. Great for rehydration and electrolyte replacement. You can also made ice cubes with Gatorade and suck on them. You can use Pedialyte but it doesn’t taste as good.
Glad you’re home!
I never thought about it, but it is a little weird that EMT uniforms look so much like police uniforms. Although, now that I do think about it, I think I understand why their uniforms look the way they do. It’s the police uniforms that are weird…
I’m fortunate, sort of, in that I got into to the habit of drink lots of fluids pretty young. It seems most of my various tubes and passageways are narrower than the norm,* so if I don’t keep my whistle wet things have a tendency to plug up. It’s especially bad with my bronchi, where I have the additional complication of scar tissue (poison ivy smoke inhalation).
What I finally had to do is make a ritual of it (I do love my rituals), setting aside certain times of day and certain amounts of fluid, to be consumed in certain ways, every day. Nothing like almost choking to death on my secretions because I had a little case of the sniffles to teach me to drink more water.
*So says every doctor who has poked something in them, anyway: “Has anyone ever told you that you have a very narrow-” “YES, now kindly finish what you’re doing and get that thing out of me.”
About needles and fear:
I wonder if vaccination and blood sample needles were thicker in the late 1970s/early 1980s, did they hurt more as a small kid or did I learn to hate needle sticks because they did the fucking painful Mantoux* test to me at least three times.
However, the (Salk) polio vaccine in 1985** didn’t hurt as I expected it to do. I had asked the school nurses to hold me in place one to the right, one to the left, which they did, so that they could give it to me and was flabbergasted that it didn’t hurt.
__
* = When I was 6 -- 8 years I had a relative who got tuberculosis and later in the test they did to every kid in the first grade(?) they had trouble seeing if the test was positive or negative. I ran away at least once and my mom had to catch me.
** = There were a few cases of polio in Finland in autumn 1984 and they gave the Salk injection vaccine as well as the Sabin oral vaccine to school kids, others would just get the Sabin. The Sabin vaccine was given on a sugar cube.
When I started school in Germany back in 85, all school kids were tested for tuberculosis, and for some reason my test came back positive. And since I was a small child and thin as a stick, people were worried and I had to get blood tests every few weeks.
But I couldn’t understand that back then. It wasn’t the pain. I was a wild kid who always had a couple of wounds healing at any given time. It was that they inflicted pain on me willingly and without a reason.
I fought hard.
—
I learned that thirst is kind of a learned behavior. As a teen I would have a coffee in the morning, leave house at seven, return at 5 and not drink anything. Somethimes I’d get a headache and then wonder why the headache pill only helped for half an hour. Until I noticed that it was actually the glass of water that helped.
I started carrying bottles with me abd that worked.
Hi Caine,
Chigau alerted me to this…erm…wow. I am so sorry to learn of your cancer diagnosis and ongoing health issues. I’ve read through your posts and my heart goes out to you. What can I say other than “Well, bugger!”?
I’m pleased you’re home and as comfortable as is possible under the circumstances.
Louis
Louis:
Hi ya, Louis. Not much else to say, that about covers it. Well, along with about a million fucks. :D
Avalus:
All the things. I really need to get my throwing wall started. It’s an idea right now…
Voyager & Raucous Indignation: popsicles I can do! Haven’t had any in the house for a while, I’ll stock up. And yeah, I was told to get gatorade or propel, to replace electrolytes, and somewhere in this mess of a house is a bag of very old popsicle molds.
Giliell:
Yeah, it is. That’s me now, I have tea in the morning, and rarely drink anything else the rest of the day. It’s not easy trying to change that, but every day now, I fill up a small pitcher with diluted orange juice, and drink it throughout the day and evening. It’s not yet enough, but I’m going to have to work up to it. At least with the orange juice, I’m okay. Rick had brought home some Kool-aid and Hawaiian Punch, mixed up some of the latter and thought I was going to die of sugar shock.
I can’t take any credit about the popsicles. Raucous Indignation and Voyager do. I just keep a jug of water on the desk.
As well as popsicles, think about yoghurt, soup, stew as good ways of getting the fluids in, ie more liquid foods as especially until you get used to drinking more every little bit extra helps. Even really weak beer will help as you will retain more than you piss out. You should be aiming for urine that is pale straw coloured at the lightest.
We had this with Mr Jazz when he had a kidney out, for unrelated reasons he ended up back in hospital soon after the operation and they had to give him IV fluids to get him properly rehydrated quickly. He was a bit miffed as although when he was discaharged after the operation they had told him to drink lots, they hadn’t told him how much or how to tell he was drinking enough. He had been drinking more than he used to but not nearly enough. He now manages with drinking plain water, by having pint glasses at home and work and keeping careful count. We both find soft drinks a problem as they are nearly aalways overly sweet, plus far too many are fizzy and I don’t do fizzy. There are more sophisticated soft drinks on the market these days, but they are very expensive compared to the colas etc.
Anyway glad you are home, hope the animals are helping to keep you sane and wishing you lot of fierceness and anger.
Oh and yay for morphine!
jazzlet
I like cold herbsl teas. Mint, rooibos, etc.
They don’t go stale when you take them with you like plain water does.
Often I drink a glass of soda water, no flavouring or anything. I like the bubbles tickling my nose but the little brown cat hates me wafting the glass past her face. My local supermarket has home brand big bottles for 99c each.
Caine
I am sure you already read/heard this, but sweet drinks are lousy for hydration. I like lemonade (Fanta specificaly) but I have to dilute it at a ratio 1:3 with water in order to be palatable and actually quelling thirst instead of increasing it.
To me the idea of drinking a cup of coffee/tea in the morning and then nothing the whole day is quite a peculiar one. I got used to drinking 2-3 liters of water at a young age, because my father had a kidney stone and my mother was afraid I will get them to, so she took the care to learn me proper drinking hygiene.
FWIW I have now a daily routine -- 0,5 l tea in the morning, 0,5 l fizzy watery drink at work before lunch, 0,5 l soup for lunch, 0,5 l tea with afternoon snack, 0,5 l fizzy drink before dinner, 0,5 l of whatever takes my fancy. At the very least. And I sip water all the time.
This means I wisit the restroom more often than others, of course.
Last weekend I got so caught up in work that I forgot to follow the routine. This coupled with the work being physically intensive (thus sweating a lot) caused me a splitting headache in the afternoon. I do not know wheteher people who have to increase their water intake above the level they are used to can experience similarly unpleasant side effects.
Charly:
I haven’t had any so far, outside of it helping to keep my energy levels up. They’re still far below normal, but better.
Lofty:
I’m with the little brown cat here.
Caine #30,
“Well, along with about a million fucks. :D” *
blah
*It’s been so long since regularly posted at FTB I’ve forgotten the quote tags…
I tried quote and q and came up with what looked like Comic Sans in preview. In your weakened state I felt very strongly that Comic Sans was simply a bit too far.
^ Well double bugger…hit post not preview. I seem to be winning at intellect today!
I was going to say that (in response to the million fucks) that I have always admired your restraint. I wouldn’t be so sanguine! :-)
Actually, although delivered tongue in cheek, that is a serious point. You seem to be handling this with equanimity, which is impressive.
Louis
Oh yes, the blah bit was obviously my test thingy…
(I did this in a meeting once. To check some formatting I put “blah” in a bullet list and forgot to take it out.)
Louis:
Italics are fine! :laughs: I don’t care about that sort of thing at Affinity. My virtual house is as happily messy as the one I’m sitting in. Anyroad, it’s <blockquote>Place Text Here</blockquote>
Oh, I haven’t been restrained. I’ve been angry as hell, neared meltdown space, the whole nine yards. So much of my background, growing up, was survival based, I’m quite hardened to people and things which threaten me; if I know anything, it’s how to survive, and in my life experience, break downs aren’t permissible, they just make the predators move in faster, which has in some ways, made this more difficult for me, because I can’t just give in and cry my heart out, even though I’ve felt that often. Instead, I call on that ever present core of radiant fury, and punch the fuck back.
Impressive. :laughs: I don’t feel impressive. And y’know, I don’t really think I am. It’s just that I’m one of the small group of contrarians who are refusing to stay silent about cancer. I don’t want to talk around the edges of it, I don’t want to talk research or tech or fundraising. I don’t want to talk about diets, exercise, being a fucking saint, about being sickly pink with positivity. I want to talk about CANCER. I want to talk about all the shit no one else will talk about, as an every day person, just like all the other every day people who hear that news. I want more attention paid to all the people in Cancerland, including all the caregivers, all the friends, all the families, everyone who finds themselves sucked into the madness of cancer.
I’m just not the type to shut up about it, and I’m not going to because it’s important to me to normalise this nasty ass disease, so that people don’t find themselves locked into the societally imposed pariah status, reduced to silence and whispers.
Hey, I’m ranting again! Now I know I’m feeling better. :D
Louis:
Now that’s funny. I probably would have done that on purpose and gotten fired for it.
Caine,
BLOCKQUOTE! ARGH!!!!!! Of course.
Good to see a healthy rant. I did notice your…erm…”critique” {cough} of the “positivity movement” in cancer therapy in a few posts. You are a lot more tolerant than I am. There would have been a wailing and gnashing of teeth and the ground would have been laid waste in several directions. Actually, now I think back on your posts, I think we might be about evens on this one! ;-)
Louis
P.S. luckily my colleagues thought it was funny.
It’s nice to see/read you Louis, I hope you’ll stick around.
(sez chigau, inviting someone else into Caine’s space)
Chigau:
Hahahaha. Feel free, you know it’s pretty informal around here.
Hi Caine! Do you remember me?
I’ve been away for a long time as you may have noticed and I just realized now what was going on with you, just read through all the Chronicles :( …I don’t even now what to say but I definitely needed to say something. I wish you all the luck going through the treatments and hope all pain and discomfort can be kept as low and controlled as possible. Take care of yourself. I’m glad you’re home now and receiving all the love from the rats :)
Oh, I also have to join you in shouting FUCK CANCER. The reason I’ve been away is that I had to re-adjust all my life in order to care for my mom. She was diagnosed in 2016. Lung, stage 4, bone mets… It sucks. The disease sucks, the treatments’ side-effects suck, it all sucks. But the small things keep us going. Our garden (already planing everything and buying seeds to fill it with beautiful spring flowers!). Our pets (most recent one is a cockatiel I rescued, she’s the sweetest thing, I will have to show you a photo of her someday). Her knitting. My photography. Focusing on those things seems to help. But yeah, also anger. Anger is a big part of it. How could it not be.
Well. I will stop myself here before this develops into a rant. Just wanted to say I care and I will definitely stick around, even if lurking more than commenting.
Nightjar #47
I remember you. Welcome back.
Nightjar! Of course I remember you.
Oh gods, I am so sorry. That’s a truly rotten diagnosis to hear, it’s scary as fuck. Every best hope I have, I hope your mom continues to kick it in ass for many years to come. Yes, the little things, the bits of normality you can pull in every day, or even every week, they matter so much. I miss your flower photos!
You can rant whenever you like, and as much as you like. That’s one of the reasons these chronicles exist. People need a place for it, where they aren’t expected to be all happy and perky. Lurk all you like, but there is an open thread here, and I’m heavily photography based, and I’d dearly love to feature anything you would ever see fit to send me. My email and the link to the open thread are on the sidebar. I hope you pop out of the woodwork now and then, I’ve missed you. ♥
Hi chigau! I remember you too, I’m happy to see so many familiar names around.
***
Caine,
Thank you ♥ I will take a look at the open thread and I’m more than happy to send you flower photos once in a while! And birds too! I see you have something called The Daily Bird and I’d be delighted to have some of my photos featured there for sure :)