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.

Cancer Chronicles 13: Breakdown Days & Fuck That Noise.

I’ll start with FUCK. THAT. NOISE. ^ because it’s easier than the intimate stuff. This…thing is on the wall of the exit hall leading out of all the oncology exam rooms. I hate to say, but this is far from the worst. The whole place is soaked in crap like this, and worse, deep catholic sentiments (quotes from motherfucking “saint” Theresa* and the like), and the rest is all “brave! hope! courage! faith! positivepositivepositive!. It’s enough to make a person puke and not stop. So, “Be Brave” with a cutesy arrow. Obviously, no one thought that one over very much. Implicit bigotry is always there, and obviously the, er, person who did this didn’t think at all. I could never in my life call the person who did this utter piece of shite an artist. Ugly, tacky, racist. It should be burnt, along with all the rest of such crap.

What does such an admonition do for someone who is almost catatonic with fear? How in the fuckety fuck does such a thing help that person? It doesn’t. It’s yet another scalding burden to place on the shoulders of that person, that something is terribly wrong with them; that they should not feel fear, no. They should square those shoulders, jut that stiff upper lip, be brave. Fear and anxiety are perfectly fucking normal when you get to hear It’s CANCER. Each person is different, and even those who manage to take the news with equanimity do not need to see such shit. We do not need to be told we should be “brave! hope! courage! faith! positivepositivepositive!. We should not have to confront such crap at every turn. Sure, there are people who might love seeing fucking Theresa quotes, but you know what? You can get such shit at home and your place of worship, if that’s your thing. And once again, those of us who are godless are not even considered when all this littering of religious crap is being done. People of other religious beliefs are not considered either, no, it’s all christian crap. The people responsible for picking this absolute shit out need to be taken out behind the woodshed and given one hell of a good smack.

ETA: To all the offended Christians: this notion that christian sentiment is somehow universal shows a breathtaking arrogance and an appalling lack of thought when it comes to other people. My cancer is not about your god, and no, I don’t give one tiny shit what you think about it. Anything me is not about your god. Please, keep that nasty god to yourself. You can drape yourself in instruments of execution, rosaries, prayer books, all that, but try to get it through your heads that it’s personal, and it does not apply to all people.

There is so little thought when it comes to cancer decor, and yeah, that’s a fucking thing. There’s zero honesty in any of it, it’s just “open your mouth and swallow the bullshit, honey, and if you aren’t brave and hopeful and full of faith, well that’s on you. YOUR FAULT.” There is no recognition of all the actual emotions threatening to boil over. No anguished “why”. No fear. No anxiety. No head full of thoughts and questions about how you will manage anything. No anger. No FUCK. No spectre of death. The other side of cancer decor is all obsequious gratitude, generally in the form of survivor art. There’s one of those pieces hanging in the oncology waiting room. No, there’s nothing wrong with being thankful and happy you made it out the other side with your life, but this kind of crafty art is terribly grating, because it evokes people on their knees (in this case women, a group of breast cancer survivors) giving worship. Fuck that noise too. Medical are doing their jobs, it’s what they do, and I’m pretty sure they’re thankful for every patient who survives, but you don’t find them doing worshipful art pieces. There’s a terrible imbalance in Cancerland. People end up feeling like it was the bad old days, where doctors were gods, and you didn’t dare make a sound, but meekly went toward any treatment you were pointed at, and no matter what happened, you should be on your knees in gratitude. Cancer has a way of smacking you the fuck down, and until the anger shows up, you don’t feel terribly strong. Or fucking brave. For some people, the fear will dominate, which tends to keep them quiet, even when they shouldn’t be. You can recognise them, like sheep being led to slaughter, meekly plodding along. All the “brave! hope! courage! faith! positivepositivepositive! crap doesn’t do anything for them.

So here’s a thought. Take all the “brave! hope! courage! faith! positivepositivepositive! crap, pile it up, and burn it. Instead, get warm, colourful posters and photographs. Flowers, water, dance, play, beautiful things which provide slender threads to good memories, to future hopes, threads which keep a person linked to thoughts of life. Things which represent to ALL people. No false cheer. No fucking admonitions. No hint of anything being your patients’ fault. Warmth, colour, life. Let people make their own associations, the ones which are most important to them. Cancer decor, as it now stands, needs to die, stat. It’s probably helping to kill a certain percentage of patients. Trite bullshit doesn’t help anyone. Stupid clichés that you’ve heard a million times don’t help. If you’re setting up an office somewhere, be original and actually think about your patients, think about how much this twee garbage does not help. Think about what might make you feel better if you were in the cancer seat. From now on, I might have to make sure I don’t have a lighter on me when I have to go to oncology. The temptation to set all that shit on fire is near overwhelming.

Okay, on to breakdown days. They will happen. Might not happen often, might not happen more than once, but one of them has your name on it, and will hit with the force of a sledgehammer. Mine was a couple of weeks ago, when treatment had been pushed back for the third time. I found myself crying. In public. For me, that’s unthinkable and it was mortifying. I couldn’t stop, and I wanted to start screaming all of my fury, too. The whole mess didn’t last long, even though it felt that way. I was back to my normal cynical humour, but that breakdown left a deep and lasting mark. It’s one which won’t go away. It took too long for the penny to drop, but I finally realised that if anything pushes me off the mental cliff, it will be Go sit in the corner and waitwaitwaitwait. I don’t have any way of coping with that one. I just want this DONE. It’s the one thing you think about, being done. Over. Out. I found myself in the position of getting in the door, but I couldn’t even see down the fucking hall, let alone the exit door. I’m not one who sees any virtue whatsoever in patience. I can be remarkably patient when there’s a clear end goal in sight, and there’s a specific time limit. But vague, hand-waved waiting? No. What will get me through is having treatments on time, on schedule. And yes, I am all too aware that people are looking out for me, making sure I don’t get even sicker and have yet more to deal with. Yes, I am all too aware that chronic liver inflammation is a precursor to cancer. I also know that chemo increases the chance of another cancer down the road. I know all that shit. Doesn’t help. There’s already a small well of despair in my head, trying to prepare me for another four fucking weeks of waiting instead of the next cycle. One thing is sure, if that happens, I’ll be sure to be ensconced in the car if another breakdown day comes my way, so as to at least preserve a bit of dignity. A sense of dignity can be hard to come by in Cancerland. Whew, I did not want to share any of that, but honesty seriously counts in Cancerland, and it has to take priority. That’s all I have for this chronicle.

*All the people Theresa “ministered” to were put on filthy cots on dirt floors, and denied pain medication, although it was available. Terminal people in immense pain were told “suffering brings you closer to god.” Yet, when Theresa was ill, she was put on a jet, flown to the U.S., put in a private room with all the amenities, which would be way out of reach for most people, and you can bet she was given more than adequate pain meds. She deserves zero respect, she was an immoral hypocrite.

First Reaction: Bad Flash Update.

So sorry for the bad flash, between one zillion things to do today, serious medication, and cancerland in general, I’m lucky I remember how to use a camera. Not a good effort, but it’s too damn cold to wander outside in my robe.

First Reaction, © C. Ford, all rights reserved.

First Reaction, © C. Ford, all rights reserved.

Upper left corner, WTF Duck and Face, bound and gagged. Middle left, the remnant of pre-cancerous me. Lower left corner, the Welcome to Cancerland Mesmerowlbat. Upper right corner, the Cell Slug, she’s a good one. Lower right, Face – anxiety, fear. All bound in a cell matrix. The cancer cells are the red-purple ones. Markers on Bristol, 16″ x 20″.