Back, Sort Of…

This ^ is for Chigau – I already have the daisies!

Today is the first day I have not had to be in town all bloody day. Hospital, Cancer Center, Hospital, Pain Clinic. I have a host of new meds, some for the sciatica, which are helping, but basically, the most helpful thing there is rest, which I won’t be getting much of at all. I have been cleared for radiation & oral chemo. I picked up most of my oral chemo meds; the experimental drug I pick up on Tuesday, when I start radiation. The schedule is going to get crazy fast: I have to be in town Monday through Friday for the next five weeks. Blogging might get a tad erratic, to say the least. Rick and I will be staying in town on Tuesdays and Wednesdays.

There is some very good news: my tumor markers have gone from 11.9 to 3.6. Yay me. I wish to hell I could skip radiation. This week, I had my ‘cradle’ molded and fitted. Before you start radiation, you’re placed in the scanner, with a sort of plastic bag under you from your waist to past your feet. The edges are filled like a bean bag, and the technicians roll and mold this all around you, then the air is sucked out, and it forms a hard plastic mold. You lay down in this cradle each time you’re there for treatment. If you choose to have this done with shoes on, you have to wear the same shoes every time. I also had my tats done, not at all like an actual one. Picked up Aquaphor for burns and other relevant stuff.

Met my new oncologist, a very cheerful and enthusiastic person. We quite like them. I’ll probably have to be spending a bit of time in a wheelchair when in town, all the walking involved won’t do the sciatica any good. Oh, that’s right, I have all this paperwork I have to go through and start filling out a ‘pill count’ diary for the oral chemo and experimental; christ, I almost forgot all about that. My research person and I had a good moan about how pointless this type of paperwork is; I could be giving the pills to my dog and still fill out the paperwork like I was taking them and all, but this is going to be “drown yourself in paper” time. I also have to remember to take the experimental drug with me every other week, so a pill count can be done. Again, pointless.

Now, I’ll try and get a bit of blogging done!

Creatures of Brain Sorbet & More Admin Crap.

Creatures of Brain Sorbet, © C. Ford, all rights reserved.

Creatures of Brain Sorbet, © C. Ford, all rights reserved.

A little while ago, I decided I needed a break from Thorns, a sort of sorbet for the brain. As it turns out, a good decision – I need something to focus on without investment because I have been a wretched heap of misery since Thursday morning. Upon waking Thursday, I discovered I couldn’t walk. My left leg went out from under me, accompanied by a scream. Trying again, I could sort of lurch if I took teensy tiny partial steps. The primary pain was to the side and down from my kneecap (outside of leg), a site well known to me, as it’s long been a sensitive one. That’s where the sciatic nerve splits off into the tibial and peroneal nerves. Standing, with no weight on the leg at all, the pain radiated down to my ankle, which was slightly swollen along with my foot, and radiated up the back of my thigh to my arse. Oh good, my sciatic nerve is on a fucking rampage. (Yes, I still went out that night to get shots of the storm, lurching and limping and dragging myself, with the aid of morphine.) Anyone who has ever dealt with sciatic pain, you know what I’m talking about, painwise. People infected with the photography bug know you have to be at least 15/16ths dead before you miss a possible once in a lifetime shot.

The last time I had sciatica, it lasted most of a year. I am just so fucked. The pain has been very near to insanity levels. There has been much yelling, a fair amount of screaming, and a lot of collapsing into a pile of sobs. Thanks to chemo brain, it wasn’t until Friday night that I did  what I should have done immediately on Thursday morning – take aspirin. The aspirin helped much more than the morphine, helping to deal with the inflammation. It’s not helping as much now, but hey, at this point, I’ll take what I can get. I did have to fucking crawl into the lav on Thursday morning though, so I was bit preoccupied. Of course, another storm hit, and the circuit breaker which controls my studio lights keeps flipping off every hour or so. That means…stairs. Interesting to navigate when you can’t bend one knee without screaming. The breaker just went again. Fuck it, I’ll get it in the morning. Apparently, the pain and humiliation of the last four days wasn’t quite enough, as I have been called back into Cancerland early.  My oncologist (first one) insisted I meet  again with Cole (radiation doc) tomorrow (Monday the 18th). Just what I need, a nice long car ride to irritate the holy fuck outta my sciatic nerve. Ought to be fun. I suppose I’ll be getting my tats tomorrow.

Poor Jayne, he’s about a wreck, not knowing what to do with this screaming one second, racked with sobs the next person who appears to have eaten his regular person alive. Thanks to the confluence of morphine and aspirin, I can get 2 hours or so mostly pain free a day, but mornings are a nightmare, because after sleeping, I’m right back to where I was on Thursday morn.  This is one situation where I’m truly thankful to be an atheist. To think or say to myself: the universe is pissed I didn’t take the hint and die, so it’s going to keep dropping  big-ass bricks on my head is obviously sillier than fuck, and can be dismissed as a pity party moment. If I believed in a god though: god is pissed I didn’t take the hint and die, so he’s going to keep dropping  big-ass bricks on my head, I think I would be in a very bad and dangerous place which would lead to very bad decisions, like stopping treatment and placing myself in “god’s hands”, going the “god’s will” route.

It’s now time to stop faking it (puttin’ on that brave face).  I’m becoming increasingly fearful of showering, scared I’m gonna fall and kill myself in there. Think it might be time for some accessories in there, or at least a plastic chair I can sit on, or fall back on. Ah well, time to face the shower. Anyroad, I will be taking Monday the 18th completely off, I didn’t have time to schedule anything, either.  Going to sleep as long as possible, take much aspirin and morphine, wrap myself in pillows, and try to get through the day without breaking the fuck down, and I’ve felt much too close to a breakdown the last few days. As far as I know right now, I’ll be back to Affinity sometime Tuesday. I know my blogging has been on the shitty side lately, really sorry about this, I’ll make it up to you all.

A Case of Bad Timing.

This little gem arrived in the mail yesterday. Might be nice if they could put off the invite until I have officially and for sure survived cancer. I can only imagine what someone going through a relapse would feel, finding one of these in their mailbox. FFS, a little organization and thoughtfulness can go a long way. I can’t say I was any sort of impressed with it, and it shocked Rick, as his first thought was the same as mine: not yet a survivor, and we don’t need to be reminded of that one. Also in yesterday’s mail was a letter from Blue Cross, informing me that the Xeloda (Capecitabine) for my next phase of treatment had been approved, however, approval was not a guarantee of payment. That’s where they left it. I have a sinking feeling about this, that I’ll start, and then they’ll weasel out of payment. I don’t yet know what my dose will be, and while Capecitabine is on the relatively cheap end when you’re talking cytotoxins, it could still add up to thousands over 28 days. Cancerland, always full of surprises. <Insert near-fatal eyeroll here.>

© C. Ford.

Life Is Not A Ringing Bell.

From rq, a most beautiful art work: So out of that comment conversation earlier this morning/today, I made some art that looks completely unrelated but came out of the emotions. Also it is called “Life is Not a Ringing Bell” and I have decided to dedicate it to Rick. Such a beautiful piece, filled with quiet emotion and love. Life is not ringing a bell, but it is having a partner who loves you enough to nag you into doing what you should, and having a friend who can express that so well. Thank you is so very inadequate. Click for full size.

© rq, all rights reserved.

Rock, Paper…Plant.

Last week, a colourful bucket full of hand painted stones was on the reception desk in 7 (infusion). The stones were painted by a 3rd grade class for all the people undergoing chemo. We chose our rocks, they are lovely little tokens, like carrying good wishes with you. We also brought home books, and a lovely plant. I will probably be snoozing most of today, having been up all night with the big, bad butt pain again. It’s a right pain in the arse, literally. As usual, click for full size. As for the books, I finished Bird Box, reading it on 7, and the ride home. It was interesting. The concept was certainly intriguing, but fell a bit short on execution. There were questions which never get answered, leaving me with a vague sense of dissatisfaction. Notwithstanding, it was still a good tale, and it was a quick read. It’s a debut novel by the lead singer of the band The High Strung, Josh Malerman. A movie has been made, and will be released by Netflix this December.

© C. Ford.

CC Notes: I’m Not Sorry.

© C. Ford, all rights reserved.

© C. Ford, all rights reserved.

Okay. I’m going to start with reiterating that what I write here is about my experience with cancer treatment, and my feelings about it, it’s in no way general or applicable for painting with a vague and broad brush.

I am not sorry in the least little bit for not celebrating the first round of chemo being done. I am not sorry for viewing this as a completely non-celebratory event, nor for feeling this way. There was relief, and a fleeting sense of being free. That last one didn’t last long. As usual, the chemo has left me feeling half past dead and seriously dehydrated. So, I’m back again today for IV fluids. I’m only going because Rick refused to let up asking about going in for fluids. These days, he easily recognises the signs of dehydration, so I conceded. Right now, I’d rather deal with being half past dead than going back to 7. (In my hospital, the infusion suite is on the 7th floor.)

It doesn’t feel to me as if I’ve finished; there’s always something dragging you back, and even if I could manage to stay away from 7, appointments and schedules arrive by mail and phone, and of course there’s preparation for the next round of treatment. There’s also the knowledge that you’re going to get completely battered down again, which leaves you with a deep desire to simply stay the fuck away from hospitals altogether.

This all ties back in with the ever relentless positivity business. There’s the bell, which is in infusion/chemo suites all over, you’re supposed to ring it the same number of times as your cycles (in my case, it would be eight), while everyone else in infusion applauds; for me, that’s a hellish notion, and I was more than relieved in managing to slip out quietly. I learned that other infusion/chemo suites have a certificate/diploma thing, which is even worse than the damn bell. Most of us don’t require false encouragement, we all have our own reasons to keep showing up for treatment, even when we are past sick of it, and long to walk away and forget. You experience resignation soon enough in treatment, and simply getting through one phase is just that, nothing more. What most cancer patients are looking toward is the final door, that light at the end of the fuckin’ tunnel, when you get to walk away for real. For other cancer patients, there is no exit door, they’ll be in treatment until they die, and in such cases, it’s really callous and rotten to get all positive and celebratory over a single phase of treatment. Chirpy, trite sentiments do not help in the least, and they give people something empty to say without having to expend any thought on the actual person and their situation. Sometimes, there just isn’t anything to say, and that’s okay. Silences don’t have to be filled every single time, and silence is better than a perky positivity landing in compleat awkwardness.

This is not to say I don’t understand someone having joy over getting through one phase or being happy for me; it’s that I don’t feel that joy myself. I’m still looking at months worth of treatment and pretty much the rest of this year being dominated by cancer. I want my life back, and if I get that, then I’ll celebrate. Quietly.

And now I have to get ready to return to 7.

Cancer Chronicles 19: Eight!

© C. Ford.

© C. Ford.

As of yesterday (Friday) at 9:14 am, the pump was off and I had finally finished my eight cycles of chemo. The last two cycles had to be reduced, just to get me through, but the independent IV fluids helped more than anything toward this latter stage. Some people sail right through their initial chemotherapy; others don’t. My friend in colon cancer treatment had such a rough time with hers that it was cut short and she was moved on to radiation. Me, I got pushed back time after time, especially as the experience with neulasta was a very bad one for me. There aren’t any rules for getting through chemo, everyone is different, so if you find yourself in treatment, don’t go thinking there’s something wrong with you or the way you’re reacting to things. It’s not predictable, just take things one cycle at a time.

The last two weeks I had been having one hell of a time with nausea and a low level migraine haunting behind it. I was being good, taking my Zofran and all that, when it turns out that Zofran can, and often does, cause headache. :sigh: It would be so fuckin’ nice if people told you this before hand, rather than two weeks after dealing with shit. Zofran is a standard chemo prescription, so if you’re already prone to headaches, you might want to head that one off at the pass and request a different anti-nausea drug. For the most part, besides the dexamethasone, I found OTC Dramamine to work well enough.

In my infusion suite, there’s a tradition for reaching the end of your chemo – there’s a large bell at the doorway, and you’re supposed to ring it the same amount of cycles you’ve been through. On Wednesday, I went in with a large bag filled with freshly baked brownies, apple crumble, and banana cake for everyone. I was allowed to slip out quietly with no fuss. Sometimes, bribery is a good thing. ;) Walking out that day, I  could not get outside the hospital fast enough, it felt as though I was breaking out of prison. When you’re in treatment, it just becomes this endless round of repetitive appointments: Register/Lab/Oncology/Infusion, which not only wear you down, but they take over your life. Everything centers around them.

For all that Wednesday felt like a joyous prison break, I only get three weeks out. My oncologist wants me started on Xeloda (oral chemo) and Radiation on June 20th. I think I’ll be meeting my new oncologist then too. Maybe. Appointments are up in the air. My oncologist is retiring, so I’m getting a new one. Then it’s off to radiation and that particular doctor, who I haven’t seen since all this started. The urge to run away is high again, because everyone I’ve talked to has told me that if anything, radiation and xeloda is much, much worse than chemo. Oh yay. Given how easily my skin burns, I am so not looking forward to that one. Well, all I can do now is try to enjoy my three weeks. It would be nice if we had Spring, or even Summer here, but it’s been day to day storms, clouds, wind, cold, and basic grayness.

Some notes on personal care here. One thing I don’t think I’ve mentioned as of yet: scent sense. There are rules in Infusion suites, such as No Hot Food, and that goes for everyone, including nurses. That’s because the smell of hot foods can trigger bad things in chemo patients, and that goes for all other types of smells, too. If you’re going to be in treatment, or be hanging around with someone in treatment, go smell free. If you can’t manage to give up something scented, like a shampoo, make sure it’s an extremely light scent (absolutely not food based, like strawberry or something), with no throw (meaning it doesn’t extend past your person). Outside of that, no perfumes, and no smelly lotions please. You never know what might set someone off, and give them one of the worst days of their life.

Chemo left me with extremely thin hair, which has been quite the shock, given how thick it used to be. I’ve kept the length, but the thinness, oy. I wasn’t getting any new growth, either. I had read that taking biotin helped with the peeling nails business, and while I’m not big on supplements, figured it couldn’t hurt. I’ve been taking 5,000 mcg a day for a while now. Didn’t do a damn thing for the nails, but my hair started growing again, albeit very slowly. My hair had also gotten so dry it was brittle, no moisture anywhere. Conditioners did not help. IV fluids did help somewhat, but my hair felt and looked damaged beyond repair. I came across this shampoo at Big Lots:

L’Oréal Extraordinary Oil. Unbelievably, it helped. Really helped – for once, my hair felt and looked more like it should, with a nice sheen instead of brittle dullness, and it felt smooth and a bit moist. Not enough, but better. Continued use with conditioner has been getting it back to normal. It has a Sandalwoodish scent, which is light, and doesn’t last, so it was safe enough for infusion. It helped enough that I can use a brush now and then; for most of chemo, I had to give up a brush and go with a pick and comb. That’s another thing – don’t stubbornly cling to your usual brush or other method of dealing with your hair, use whatever causes the least amount of damage, and pulls the least amount of hair out – you’ll lose enough of it as it stands. When chemo doesn’t cost you all of your hair, it will take around 50% of it, at least. I’ve lost more than that.

Voyager sent me the Cloud 9 Naturally for badly damaged skin, and that stuff is close to a miracle. I had very deep cracks in the soles of my feet from the 5-fluouracil, and applied this, put on a pair of socks, and went to bed. Next day, they were almost completely closed. In dealing with the 5-fluouracil loss of fat pads in the fingertips, the Curel Itch Defense lotion was great (and still is), and IV fluids probably helped the most with that little problem.

That’s all for now. I’m going to go off and pretend all this crap is over.

CC Notes: When Prolapse Happens.

That ^ is what I got instead of surgery, for Six. Weeks. In case you missed it, after chemo on Wednesday (16th), a couple of hours later, my colostomy prolapsed. These are the basics of a prolapse, and no worries, no pics.

A prolapse is much more psychologically damaging than physical. This is not at all uncommon in colostomy or ileostomy, but no one prepares you for the possibility either, which is why you end up so damn shocked, and dealing with all the mental and emotional fallout. It would be most helpful if medical would prepare for this possibility, and yes, I know there’s no desire to alarm people, but that’s a bullshit excuse in this case. Being forewarned, just in case, would go a long way in making a prolapse less traumatic.

First thing: When Prolapse Happens: DON’T PANIC.

*:Graphic descriptors begin: When the pain reached a point where I lifted up my shirt in the car to see what was going on, I saw six very fat inches of my colon protruding, completely filling the bag, and rather than the bright pink/red she should have been, Grimhild was a faded pink, with sections so faded they were white. It was with absolute shock I was staring down, and then saw that shock mirrored in Rick’s face. Fighting panic, I choked out “can’t go home, ER.” Rick was doing his white knuckled best to not speed; fortunately, we weren’t far from the hospital. After waiting too long inside a triage room the size of a fucking closet, with tears running down my face, and trying like hell to breathe when my muscles completely seized (this was almost exactly like it was post-op, in recovery after the colostomy surgery, which was freaking me out), when a nurse finally came in. She got vitals, and info, and I got that all too rare experience of seeing shock on a nurse’s face upon seeing the prolapse. I was hurriedly taken into a room. The doctor was in quickly, and they were one I had seen before, which was a comfort. I was all hooked up to every fucking thing, then the doc started poking about. I couldn’t see what was going on, but Rick was watching like a hawk*, and the doctor was doing a form of massage, working the gut back in. Grimhild wouldn’t recede past around 2 inches, but that was normal enough. I was then sent for a CT scan, which revealed no blockage, but a parastomal hernia. It’s likely I would not have surgery at all if it was just a prolapse, but the hernia will require surgery. *Rick turned out be to be very skilled at doing this massage later at home, and teaching me how to do it. *:Graphic descriptors end:.

Most people with a colostomy or ilieostomy have minor protrusions now and then, generally during a movement, as that is the natural function of your gut, to be moving things along. Generally speaking, any abdominal pain associated with an ostomy is when a protrusion happens. If you note your abdominal pain increasing, check your ostomy- if there’s more protrusion than normal, the colour, and place your hand over to check for the normal warmth. If any of that changes (lengthier protrusion, faded colour, especially if it goes gray, and cold rather than warmth), get yourself to a doctor, stat. Don’t wait to see if it gets worse. Better to get it checked and not have anything to worry about.

If you’re like me, and this just comes out of the blue, and you’re faced with something which sends you into shock, get your arse to an ER immediately. If it’s taking too long to see you, start screaming. That won’t be difficult. If this never happens to you at all, that’s a great and grand thing. That said, it’s best to know this is a possibility, and to be prepared for it. It’s quite scary to see, especially if you are utterly clueless as to what’s happening. If you know this might happen, you’ll be much calmer. This is easily treatable, and in most cases not a surgical emergency, so you don’t need to worry needlessly about that, either. Most of the time, the gut is easily and gently massaged back in. In some cases, where’s there is an excess of fluid, you might note your doctor calling for sugar – don’t have an attack. This is a semi-standard trick to get a stubborn prolapse to retreat. Sugar is sprinkled on it, which absorbs the fluid, allowing the gut to retract. I do not recommend doing this at home, leave that to a doctor. This isn’t something you want to fuck up, and end up making things worse.

If you have a positional prolapse, where your ostomy is likely to start slithering out upon standing, walking, or other positions, you can easily cope with this at home. Lie down, and gently cup your ostomy through the bag, while gently pressing in and down, massaging her back in. You’ll most likely notice retraction beginning as soon as you lie down. When you get the retraction accomplished, when you get back up, keep your hand in place over your ostomy, then get a binder, belt, pants, whatever, placed over your ostomy, and carefully go about your business. It will take more than a bit of experimentation to discover just what does work for you when it comes to keeping your ostomy in place.

I did have a an abdominal binder order placed, went and got fitted (more or less), and wore it for a while on Wednesday, when we went out to eat, and on the way home. The binders aren’t exactly made for smaller type people, and really not for seriously skinny people. Mine is much too wide – it goes over my hip bones, and impinges on my breasts, so not overly comfortable to wear. It’s also very tight, which is to be expected. One worrying thing is that while eating, I could feel Grimhild trying to move, which is natural when trying to expel something, gas or more solid. The binder was preventing this, and that you don’t want. I’m not altogether sure just how much this would prevent a prolapse, either. So, at this point, I’ll save the binder for when I’m going to be quite active and out and about walking. When I’m sitting at my desk, and Grimhild is fresh from an active massage retraction, I’ve found that moving my chair right up to the desk edge, then placing a firm pillow between it and Grimhild, is sufficient to keeping her in place, while allowing for gas and other passage. Some people make do with large ace bandages, or find that a hernia or ostomy belt is more efficient; some people find that pants which cross the ostomy with a good pressure to be workable. It’s a matter of finding what will work best for you. If you use a latch or two part bag system, you might find it much more helpful to switch to a one piece, as the latch and two piece systems can cause injuries to the ostomy in cases of prolapse. While these injuries, usually lacerations, don’t cause any pain, they might lead to infection, which you do not need.

You absolutely must check the colour and warmth of your ostomy every single day, and it’s a good idea to do it more than once a day. Any changes whatsoever, get to that doctor. You’ll also need to monitor your overall temperature every day, and be good about it, because an infection is more likely in prolapse. If you head over 99, get to that doctor.

As always, as I remember all the stuff I forgot, I’ll edit to add at some point.

ETA: It now occurs to me that I was helping to move furniture a couple of weeks before this happened. In retrospect, that was a very stupid thing to do. Don’t be moving furniture.

Sorry, gone for a while…

Chemo went fine, but a couple hours later (thankfully, we were binging at Goodwill and still in town) my abdominal pain went crazed, took a look to see Grimhild making a serious break for it, over 6 inches of my colon was protruding, so off to emergency. The doc managed to massage Grim mostly back in, sent for a CT scan, which showed no blockage, but I have a colostomy prolapse, and a parasternal hernia, along with chronic anemia. So, surgery tomorrow, and I have to be flat on my back, so no blogging. I shouldn’t be doing this right now. This is all the info I have right now, figure I’ll be missing for two to three days at the least. Oh, and trust me – you do not want to see a pic, you’d run screaming into the night. It looks like a zombie got a hold of me.

I’m so sorry, I’ll be back as soon as possible. Voyager & Charly, the blog is yours, have fun!

ETA: There’s a lengthier follow up here: CC Notes: When Prolapse Happens.

Head Full of Thorns.

I’ve had thorns in my head for well over a week, and finally got started on drawing yesterday, still not done on that front, but I had to play with colour a bit today. I’ve been working late, then falling into bed, not scheduling anything on Affinity, so if I’m late, or space out regular features, blame the thorns in my head. This one is going to take a long time, too. It’s large, filled with detail, and I’m going with pencil instead of paint, which is always slower for me. It’s been so long since I’ve been able to work, I’m now consumed with the need. Bad photo:

© C. Ford, all rights reserved.

Cancer Chronicles 18: Water Is Life.

© C. Ford, all rights reserved.

© 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.

Signs of Life.

I managed a short wander today, might have pushed a bit too much. It’s still something of a shock that I have so little energy to expend, and have to stop and rest so damn much. The dizziness and ocular toxicity don’t help. Probably not a good idea to go wandering with just Jayne for company, but he did good today, sticking fairly close to me. Slowly, things are coming to life here. I saw one butterfly and one wasp, desperately searching for blossoms, of which, we have none. Surprised I got a shot of the wasp, I was shooting blind, into the sun. Most stuff under the fold, click for full size.

Box Elder Maple.

Box Elder Maple.

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