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.

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.

[Read more…]

Cancer Chronicles 17: Struggling.

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.

Off For The Day.

Yeah, it’s that time again. For once, we were scheduled for a decent time, and I took advantage to sleep in, heading out now. If all goes well, we’ll be back very late; if things don’t go well, I’m sure you’ll all hear about it. (I developed a…complication yesterday.)

Anyroad, I leave you all in the more than capable hands of Voyager & Charly. Have a good Monday, everyone.

CC Notes: Almost Back To Life.

Sorry for the abrupt disappearance, I was in very bad shape Tuesday and Wednesday. The chemo pump will be coming off shortly, and hopefully, I’ll start recovering from this last round. First and above all, my thanks to Charly and Voyager, who kept Affinity up and running in fine, interesting style. I can’t say thank you enough for that, and all your posts are so popular. Speaking of, I am so behind in answering emails, I have received them, I will answer! I’ve also gotten all the new submissions, and there are a lot, so it might be a few days before you see your stuff up, but I will get there, I promise.

I did manage to avoid another Neulasta, my neutrophil count was over 10 after the first dose of that nastiness, and it’s hoped it can carry me through the final cycles. If not, I can opt to do the more minor injections over three days, rather than the on body. This time, what knocked me on my arse was…heartburn! Yep. It started while still in the infusion center, but it wasn’t horrible. This was my first Tuesday, and never again. Holy shit, it was stuffed full of extremely talkative old folks, along with a nurse coming back out of retirement temporarily, and one who is a major, loud talker. Two of the older gentleman who had been trading work war stories, and complaining about the current crop of people were concluding their talk next to my chair, as the one gent was getting ready to leave. During his final chat, said gent was burping throughout, quite loudly. Then I heard a woman across the hall talking about her horrible bout of heartburn/acid reflux, which she dealt with by taking “old-fashioned pepto bismal.” I should have taken all that as an omen.

Chemo now exhausts me to the point that walking out of the hospital pretty much eats all my energy. I couldn’t even make it into the store to pick up my dex from the pharmacy. Got home, attended to my bag and all that jazz, then fell over into bed. Rick made me some Malt O’ Meal, which went down well enough. It wasn’t until late in the evening that the heartburn from hell hit. There was pain, there was burping. There was vomiting. I spent the night pretty much chained to the lav, leaking out both ends. Antacids weren’t helping, and I was out of the old-fashioned pink stuff. Rick was in town working on Wednesday, and I asked him to get me all the things, which he did. After taking much more than I should have of the generic prilosec and zantac, I was finally able to get some damn sleep. It still hasn’t gone away, I can feel it lurking in my throat, but here’s hoping I can keep a leash on it.

I really do count myself as lucky that I made it through half my cycles without feeling terribly bad. I’m not sure I could have carried on if it was like this from the start. I still remember the day of my first infusion, I was full of energy and appetite after. Seems like half a lifetime ago, and that particular me is nowhere in sight. The fatigue is mind-numbing, and the shake is worse than ever. In the good news department, pain has receded a fair amount. In the bad news department, chemo brain keeps getting worse.

I will be sleeping in each day until I’m fully back to life. Even though I get up early for me, around 9am, but that’s okay, as long as I don’t have to set a clock.

Cancer Chronicles 16: I Just Don’t Care.


Herein is a litany of complaint. If you could do with less whine in your life, skip this one.

Friable. That’s me. I have reached the I just don’t fucking care point.  I feel so beaten down, and each beating is worse than the last, and like any beaten animal, I just wait with dulled eyes for the next blow to land. Part of this is the chemo, but it’s the pegfilgrastim (aka neulasta) which last strawed me. I had been told about bone pain, and possibly flu like symptoms with the neulasta. I did get random bone pain, but that wasn’t really bothersome. What happened in my case was all my back muscles seized up and went into full cramp. Then they stayed that way. Still that way. Imagine your whole back being one big charley horse. I talked about some of this in this thread, it’s hard to describe, but it makes moving seriously painful. The motor problems from the oxali haven’t gone away, and the neulasta seems to have done some amplifying, along with giving me a very bad shake. All of which are not good when it comes to drawing and painting. I can’t even turn a brush anymore, a life long habitual movement. On top of everything, the butt pain has come back, and I doubt that’s any kind of good sign.

The chemo brain is worse, too. My startle response is through the roof, because I’m not making the connection from sound to recognition. Usually, you hear a sound, auto-recognise it, and consign it to background or investigation. Everything I hear now has me jumping out of my skin. I’ve been saying all the wrong things to people,  ended up being thoughtless and stupid, and while I never meant that in any way, intent isn’t magic, and I got responses I fully deserved.  My ability to parse social cues, never what you’d call brilliant, is almost completely gone. Every time I fuck things up, I spend days on end crying and basically falling the fuck apart, and when I try to apologize, I manage to make it all worse. I figure it’s perhaps best to not say much these days. At least that way I won’t upset anyone.

Then there are all the little weird things. On Friday, I stepped out on my back deck to take a photo, and was sitting on a step. I shifted, and found myself screaming because it felt like I’d been stung by a wasp, even while a tiny, still functional part of my brain recognised there’s still snow all over, so no wasps. I checked my foot, it was fine, it had made fleeting contact with a piece of fucking ice. Ice, and I’m outside, screaming. It’s all so damned absurd.

And the fatigue. I can’t even characterise it. What’s levels past bone deep? I sleep, it’s never enough. Constantly, thoroughly chilled these days, even walking into another room in my house. I can’t stay long, and have to get back in front of a space heater. And it won’t stop snowing here. Sometimes, a person can get the feeling that Fate is having a good time fucking them around. My hair has gotten very thin indeed, and I’m losing a fair amount of it. That’s not helping.

On Tuesday, I get round 5 of chemo and pegfilgrastim on Thursday. Usually, the week before the next cycle is a good one, because you’ve mostly recovered from the chemo; not happening this time. I feel like shit, and back we are to I just don’t fucking care. I don’t care what anyone wants to do, just fucking do it so I can get the fuck out of this.

I do realize that none of this is remotely encouraging to anyone who is going into treatment, but my experience so far is just that, mine. Everyone is different, and there’s no way to tell what side effects might hit you the hardest, or what agents for that matter. The pegfilgrastim is a much meaner agent in me than the 5-fluorouracil or oxaliplatin. It’s quite likely it’s the other way around for a lot of people in treatment. Treatment is Sisyphean in nature, you shove that effing boulder up and up, and there’s someone at the top to send you tumbling down again, until the day you get to the top, and you get to stay. It’s that day you have to focus on. After tomorrow, three more cycles, then I get to move on to radiation. This is going to be one long year.

Inside Cancerland: Distortion Series.

The Neulasta not only gifted me with a fucktonne of pain, it caused a full body shake. Shaking hands aren’t exactly conducive to drawing or painting, so I put the stuff I had been working on away, and started the distortion series, because it’s easier to cover up all the mistakes and slips. So, Inside Cancerland: Distortion Series 1, Infusion Invasion. 16″ x 20″, Watercolour and marker on Bristol. Click for full size.

© C. Ford, all rights reserved.

Cancer Chronicles 15: The Takeover.

The chemo pump.

A familiar sight, I’m attached to the chemo pump again. Chemo brain is in full force, so if this post is disjointed, that would be why. I’m also having some motor problems with my right hand, so there may be may typos. (Motor problems thanks to the oxaliplatin). Just how much cancer changes and takes over you life has been a thread in these chronicles from the start, and sometimes that sense lowers, and you don’t feel it as much, and other times, it feels like it’s bashing over the head, pile-driving you into the ground. Yesterday was one of those days, left me frustrated, annoyed as fuck, and completely out of control of my own life.

Because it’s cancer, and presumably, you don’t want to die yet, you end up at the mercy of, and under the thumb of medical and insurance. Last week, I agreed to Neulasta injections so I would not be pushed back on chemo anymore. For whatever reason, my oncologist left out some rather vital information about this fucking process, and he will be hearing about that in two weeks. Not living in town, I was not about to come back into town on Fridays to have my pump detached, I do that myself. Now I find out that the Neulasta cannot be administered until the chemo pump is detached. Neulasta comes in the form of patch with a  sub-q needled, timed to deliver medication 26 hours after the chemo pump is detached. It’s a peel and stick:

So, I should be able to do this at home too, right? Wrong. Because it costs $6,000 a shot, the insurance companies have a rider that it must be administered at a clinic or hospital. Here’s one big FUCK YOU to fucking insurance companies, you all fucking suck. What in the fuck do they think I’d do with the damn thing? Sell it to a black market? Feed it to my dog? Flush it down the toilet? Well, one thing is for certain, you can’t trust a patient with it, oh no.

So, this week, that means our schedules get all manner of fucked up, have to go back in this Friday for less than 5 minutes worth of ‘treatment’, and for that, we get to waste time, pay for fuel, and have to register for the less than 5 fucking minutes, which means handing over another $25.00 copay. We’re being $25.00 dollared to death. Naturally, we tried to change the schedule so we could work things out so at least Rick wouldn’t be burning up more vacation days and losing work time. Could we schedule for Monday? No, because people don’t seem to think working on Mondays is cool. We can’t switch to Mondays until Cycle 6. Maybe.  Anyway you look at it, we’re getting screwed over with the sharp end of the stick.

I could feel the thin thread fraying and getting ready to snap. You lose control over your life from the moment you hear ‘Cancer’. That’s it, you’re sucked into Cancerland, and there’s nothing you can do, and pretty much all of it sucks fucking dirt. There’s no good place to discharge all the anger and frustration, either. It just ends up randomly leaking out all over the place. I really have to get that throwing wall set up. I could smash a whole store full of glass right now.

It’s also a major annoyance to see how much rural people get screwed over. Sanford keeps expanding, they’ve about eaten up a good portion of downtown Bismarck, but will they expend any fucking money on satellite clinics? No. You live rural, you get one big fuck you from hospitals. They don’t give one shit about how far you have travel, or how often. Oh yes, you can apply for an apartment in Bismarck, but this assumes people have no lives whatsoever in ruralistan. Around 50% of the people I’ve met in chemo live way out from Bismarck, anywhere from 1 to 6 hours out. Even when Sanford does bother to try and set up elsewhere, like the hospital they’ve started in Dickinson, they don’t have an oncologist, and they most likely simply won’t do oncology there, people will be referred to Bismarck. And while a hospital is needed out Dickinson way, I’d rather see satellite clinics, which could at least deal with things like Neulasta, so people wouldn’t have to travel so damn far for five fucking minutes. It’s yet another reminder that above anything, hospitals are a business, and no matter how they represent they are all about patients, they aren’t. At least not the rural ones.

Even with all the noises that would be made about how they can’t do satellite clinics because blah blah bureaucratic bullshit, why not an outreach program, to train local physicians so they could do the 5 minute crap, like detach pumps and stick a fucking patch on your arm? I’d be delighted if I could get this shit done in New Salem or Glen Ullin.

I suppose I’ll get back to painting, if I can manage to hold a brush.

ETA: oh gods, that fucking Oxali. I went  out to put seed and suet out for the birds studio side. It’s not even terrible cold out, 35F or so,  and my fingers are numb, as are my lips, and the cold hit my throat so hard, it almost seized up and went straight into my chest, making even shallow breathing hurt like hell.

Cancer Chronicle Notes.

Not enough for a full chronicle right now, but some notes. We’ll start with an older thing that I forgot to mention way back, in the category of corporations going too far with the silly shit. After my port had been installed, mail pick-up included this stuff:

Yeah, I’m not going to become a cheerleader for your products. The most I want from your product is to no longer need it, in any way, shape, or form. I’m certainly not going to carry a card, put your little widget on my keychain, or wear a cheap bracelet. No rah! rah! here.

Side effects:

If one day you find that your fingertips feel calloused, and appear badly pruned, that’s the 5-fluouracil making your little fat pads disappear. Use a lot of good cream, which will help a bit, but not over much. The redness is cancerland normal too. They can get painful, so have a care if you can.

Okay, this next bit is sort of side effect too, I guess. If you’re an odd one like me, and end up with chemo induced constipation, old fashioned Milk of Magnesia is your friend. Your best friend. Works without inducing diarrhea, but it can take a while, especially if you end up with a blocked ostomy. Took one dose every day for 7 days with me.

In the category of things no one ever tells you about: projectile diarrhea, it’s a thing. When you have an ostomy, this can happen, and it’s a bad damn day when it happens while you’re unbagged. Happened to me right before I was going to apply a new bag. Your impulse is to jump away, stifle it, you’ll just spread the shit even further. If you have a towel to waste, you can grab one, hold it against yourself until you can get into the tub or shower, buuuuut, this happens remarkably fast, and you’ll be tempted to not believe your own eyes at just how much shit can come pouring out at a high velocity. There really isn’t any good way to prepare for such a thing, but it’s best to be aware that yes, this can happen. I can pretty much guarantee that when it does happen, you’ll be fresh out of a shower. And probably running late for an appointment.

That’s it for me today. Didn’t have chemo today, white count is too low, so I’ll be back next Wednesday for chemo, and I’ll be started on Neulasta injections to keep the cycles uninterrupted. I did get happy talk from my oncologist over being well hydrated; got the serious lecture about having no body fat at all. “If you dropped a knife on your abdomen, it would go straight through your intestines!” Good thing I’m not planning on dropping a knife on myself. Even so, the serious lecture means “stuff yourself silly” so I’m gonna go work on that.

Cancer Chronicles 14: Chemo Brain.

Some of the stuff which goes with me on chemo days.

Seeing as today is chemo day, seemed appropriate to write about Chemo Brain. Yep, that’s a thing. Doesn’t set in right away, so you think to yourself that it’s just normal forgetfulness or spacing out. Then it gets more intense, by magnitudes of order. If you’re taking meds at the same time, you might seriously start to question your sanity or whether or not you have a brain at all. Chemo brain is one world class, gigantic brain fart. Generally speaking, being forgetful or zoning out isn’t a big deal, but it can be dangerous at times – being in the kitchen or driving, frinst. For the most part, it’s manageable. Start keeping lists, and write things down when you think of them, else it will be out of your head 5 seconds later, often to never return. So, first thing, get yourself a nice little notebook & pen, or a pocket recorder (or set up your phone or tablet for note-taking).

You don’t have to have extra stuff with you when you go for infusion, but a lot of people prefer to have the extras. First, catch your bag. :) What kind of bag best suits is up to each person, but if you’re looking around for a nice gift for a friend or loved one with cancer, or their caretaker, a nice, large bag with plenty of compartments and pockets is a good one. Ideas for stocking the bag: individual packs of tissues, cough drops or other hard candies, small pack of drinking straws, fragrance free lotion, folding headphones, pill case, notebooks or journal, pens or pencils, and if you know their taste in reading material, books and/or magazines. If they like to draw, a pad of good paper, pencils or markers. Drinks – you always need those. While there’s usually a good assortment available in most chemo suites, if you’re fussed, you can take your own. A bottle or two of Powerade or the like is welcome; I take a couple bottles of boost, and as we like good coffee, we take the giant Thermos with us. So, depending on taste, those are all good things to gift along with a bag. A special mug can be nice, too. I have my Fuel Rats, thanks to Marcus. If someone likes to knit, crochet, or embroider, a bag specifically made for that sort of thing is great. Rather than buying knitting/crochet/embroidery supplies, a gift certificate would be most welcome.

The more organized you can be, the easier chemo days go. Having a dedicated Chemo Bag can go a long way in easing the day, you just have to grab it and go. I end up having to switch bags about, depending on what I’m going to be working on that particular day. I usually prefer something smaller than my art bag, but sometimes, it’s the only thing for one specific day. So, getting everything together on Tuesday:

Getting everything nice and neat.

All set. Just have to remember to take the bag!

When your friend or loved one tends toward a complete blank on things, don’t be surprised, and please, don’t chide. It’s difficult enough realizing that your brain on chemo has more in common with Swiss cheese, and you keep wondering if you’ll ever get back to what passes for normal. Caretakers can help by keeping all the vital info, appointments, med lists, and all that stuff. It’s very important there’s back up on all that. Just today, I found myself so grateful Rick had put all the upcoming appointments on his phone, because I didn’t know where the latest raft of paperwork was, nor any idea of what time we’d have to leave in the morning. Turns out lab is at 9 am, so we have to leave at 7:45 am. It’s also very important to be extra nice and thoughtful towards your caretaker when they keep asking if you’ve remembered everything, because they aren’t trying to be annoying, so even if you feel like snapping, don’t.

Cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment – these are phrases you may hear from medical, and they all mean Chemo Brain. The primary problems are memory lapses, trouble concentrating or focusing, difficulty remembering names, dates, details, events, inability to multitask, disorganized, slower thinking, having difficulty with common words (can’t remember specific words when talking or writing). The problem with remembering common words has hit me particularly hard, and it’s been making me a bit crazed, sitting there, and trying to remember a word I know, and know well. In my head, I can see a circle of words, with a fuzzed out blank where the word I want should be. I often find myself starting a specific task, only to get distracted, start something else, then remembering and going back to the first, lather rinse repeat. It’s frustrating as fuck, and makes me feel very frazzled and stressed. Just getting through one day’s regular tasks is exhausting.

Naturally, chemo brain varies from one individual to the next, and while most people experience temporary effects, others end up with very long-term effects, sometimes to the point they cannot return to work. (If this is the case, disability applies.) The effects of chemo brain are amplified by every infusion and radiation. While the person undergoing treatment becomes aware of changes in their thinking, they may not say anything to anyone. This is not something which is terribly easy to talk about, and there’s a strong impulse to try and cover it up the best you can. As well as being frustrating, it’s deeply embarrassing. Technically, chemo brain is defined as a decrease in mental sharpness, which, along with forgetfulness includes difficulty in finishing tasks and learning new skills. While chemo brain is not fully understood, there is and has been research into it, and with most things, there can be a number of factors:

The cancer itself.
Other drugs used as part of treatment, such as steroids, anti-nausea, or pain medicines.
Surgery and the drugs used during surgery (anesthesia).
Low blood counts.
Sleep problems.
Tiredness (fatigue).
Hormone changes or hormone treatments.
Other illnesses, such as diabetes or high blood pressure.
Nutritional deficiencies.
Stress, anxiety, worry, or other emotional pressure.

One thing which has happened to me is a sense of mental exhaustion. Thinking has become difficult enough that I don’t really want to do much of it unless I have to do so. As tempting as it might be sometimes, to just sit in a corner and vegetate, that does not help. It’s important and helpful to stay engaged in one way or another. If you do social things on the ‘net, keep doing them. Read, chat with people. If you write on the ‘net, keep doing that too, even when it seems to be an insurmountable task. If you’re a reader, keep reading. Read, read, read. It does not matter if your reading speed has seriously slowed down along with your comprehension rate. The more you read, the more you keep that at bay, and make sure your brain is exercised. If you find you have trouble concentrating, try audio books. Listen to music. If you like puzzles of any kind, keep doing those too. Resist the quiet – I’ve gotten quieter and quieter, less likely to engage in a conversation because it’s difficult. That said, you need to encourage conversational fluency, and that won’t happen if you never talk. Make a list of your ‘failed’ words – the ones it takes forever to drag out of your brain, kicking and screaming. Refer to it when necessary.

Stop trying to multitask. Focus on one thing at a time, finish up, move on to the next. This really does not suit me, and makes me feel like I’m on a chafing leash, but you have to do what works and enables you to get things done. Lists – start lists for everything. Eat. A lack of nutrition does not help and makes chemo brain worse. Make sure you get a fucktonne of sleep. When things get too frustrating, wander off and have a rest. No one is at their mental best when tired, and treatment makes a person very fucking tired indeed. You don’t have to try to be Heracles doing the labours. Try to get into a daily routine, and keep it. This will make things much easier, and cut down on the stress caused by chemo brain. If you can, try to track the biggest problems, write down when you have memory lapses, and so forth. After a while, you might see a pattern emerge, such as the worst times being when you take a certain med, and so forth. That can help you to avoid scheduling things when you’re likely to be at a low point in mental abilities.

Maybe the hardest thing to do: tell people. Tell your primary caregiver, and let medical know. They can’t help if they don’t know. Don’t be all embarrassed to ask for help. Those who love and care for you will be most happy to be able to do something for you.  The other hardest thing: accept help. For a lot of us, that’s a genuine hurdle to overcome, but this is important, and you need to set yourself different limits from what you’re used to, and allow others to pick up where you leave off. Last, do whatever it takes to keep that sense of humour intact.

I have this nagging sense I’ve left things out, but I feel like that most days now. If I do actually think of something which needs to be included, I’ll do an edit late today or sometime Thursday.

ETA: If you’re in treatment, especially just starting out, it’s not likely anyone will mention Chemo Brain to you. So, know this: You are NOT crazy. You are NOT stupid. This is an actual effect of treatment. You’re most likely to first hear about Chemo Brain from others undergoing treatment. Don’t be afraid to bring it up with your infusion nurses, they can help.