Cancer Chronicles 7: Shock & Silences.

The first day of chemo outfit: shirt with skulls, bag to match. The rest: black jeans, knee high Doc Martens lace ups.

The first day of chemo outfit: shirt with skulls, bag to match. The rest: black jeans, knee high Doc Martens lace ups, bright red hooded coat.

What your port looks like in use.

What your port looks like in use.

That is the giant pump which has to be attached to my port for two days. It’s 6″ in length and 7″ in diameter. They need to hire some people from Intel, it would miniaturized in no time. Has to be above the waist at all times. The other stuff is what I need to flush the port after disengaging the pump.

Cancer. The shock of it all didn’t set in until this past Monday (22nd). That’s when I felt like I was going to fall apart, and it was hard to keep tears at bay. My oncologist asked me if I wanted to start chemo this week or next; I replied “now is best, because I’m at the point of running away and not coming back.” Doc thought I was joking, but I wasn’t. I really wanted to run. So, yesterday was my first chemo day. My schedule will at least be less hectic for a while, and I’m grateful for that one.

Before I talk about the chemo, I want to briefly address reactions to CANCER. There will be a fair amount of people who you thought would have at least given you a “oh, that sucks”, but instead, don’t acknowledge the CANCER or you, in any way at all. If you’re newly diagnosed, don’t be surprised by that. A lot of people simply will not acknowledge or address the issue. There are other unexpected reactions too. Yesterday, stopped by my pharmacy to pick up Dexamethasone, and one of my pharmacists started crying when she found out I had cancer. That made me crumple up inside, and I felt awful for making her feel awful. For the most part, supportive friends and family are right there for you, and you can get to know your fellow travelers in treatment, too.

Okay, chemo. In my hospital, the chemo suite is called The Infusion Center. Long room, more like a very large, central hall, lined with individual stations. Each station has a comfortable recliner, a chair side table, IV stand to one side, and an overhead, swivel mount television with earphones. There’s a stack of extra chairs for whoever you bring with you. You go in, sit down, sign a bunch of forms, and repeat your surname and birth date for the zillionth fucking time. I’m seriously contemplating giving my birthdate as Fall 1529. I don’t think medical would be amused. Every single person you talk to, “okay, give me your name and birth date”. I know they don’t want to make mistakes, but fuck me, I’m beyond tired of it. Being a smart-ass helps, which is why I went with a skull theme. It was mostly appreciated by med staff. ETA: my infusion center comes with a nurse who never shuts up. (I was seated across from the nurses station.) Headphones and your choice of at least 4 hours of music: a very good thing.

I got all the lectures about Oxaliplatin, in particular, the cold sensitivity and possibility of peripheral neuropathy.  So far, I seem to have escaped those effects, but it’s early days yet. I have not come close to drinking as much fluid as I have been instructed to do, and I’m still pissing like an overhydrated horse. Which reminds me, forgot to get Kool-Aid. There’s only so much apple juice a person can take.

After chemo, I was feeling starved, so we ate, then we had to do a bit of shopping. I was feeling okay enough to do that, but having that giant capsule swinging about was a right pain in the arse. I was a bit antsy because I had not remembered to take my immodium with me, and while I didn’t really have that “ohgodsfuck diarrhea” sensation, I did have a weird one, which could be best described as the tumour playing at being Jack Nicholson axing his way through the door in The Shining. Just a vague sort of terror that the tumour might do something utterly mortifying while in public. So, remember to pack all the little stuff if you’re going to be out and about after chemo.

Going home, I could not keep my eyes open. I stumbled into the house, managed to shed clothes, and fall on the bed, got the giant capsule tucked under the pillow, and was out like a light for several hours. Woke up, ate too many fudge brownies, went back to bed, read Book of the Night by Oliver Pötzsch, a wonderfully fun book, went back to sleep. Biggest effects so far: crampy, tired, acid reflux and really sore leg muscles for some reason. That set in rather early in the infusion center. Other than that, okay. I’ll be right happy to get rid of this damn capsule on Friday, seriously bad design flourishes in the medical industry. Initially, they wanted me back on Friday to have the pump removed, but when we told them that was not convenient, I got instructions to do it all myself.

Still have the nasty butt pain, and can’t go unmedicated for very long, which is on the annoying side, but I’ll live. Hahaha. I feel another nap coming on…

ETA: Food. Stock up on frozen foods, and easy to prepare stuff, like cottage cheese with fruit or veg. Have things like chicken salad prepared, and bread in the house. If someone loves you to pieces and can cook, have them do up some casseroles for you. The easier it is to eat, the more likely it is you’ll actually do that. You’re much more likely to decide eating is not so important if you wander into the kitchen, and decide you really don’t want to be cooking. Also, stock up on all the ‘bad for ya’ stuff: ice cream, brownies, muffins, cup cakes, banana bread, what have you. If you have colon cancer, by the time you get to radiation, they’ll tell you to do a low fiber diet, which is basically all the stuff which is typically considered bad: white breads, pancakes, pasta, butter, cream, cheese, and so on. Having plenty of goodies around is a way to easily pig out when you’re feeling like it.

Cancer Chronicles 6: Tired and Tunneled.

Cancer Vixen, Marisa Acocella Marchetto.

Warning: below the fold is a photo of my chemo port taken right after surgery. It’s not hideous, looks kinda like a body mod gone wrong, but if you’re sensitive, don’t look.

So, the 19th. My diagnosis was on Dec. 19th. January 19th was medical hell day. I’m starting to dislike 19ths. Yesterday, had to leave the house at 5:45am for a full day: PET scan, radiation doc visit, MRI, and chemo port installation. We finished up all the medical stuff at 6pm. Tired doesn’t begin to cover it.

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Working on…

Another bag, what else? :D Monday and Tuesday, there might not be much content, I have to head in to meet my radiation doc Monday morning, and to see my primary doc on Tuesday morning. I wish they believed in late afternoons more, be easier. Oh, I should mention, the little black heart is not my design, that’s Urban Threads. Go have a look, they have fabulous stuff. Previous Bag.

Cancer Chronicles 5: A Refusal.

This won’t be my first time ranting about ostomy bags. They are badly designed, with little thought, and they are spectacularly ugly. You have 3 colour choices: beige and clear, beige all the way, or beige and white. Let’s not pretend people are this ugly ass shade of beige, they aren’t. Medical supply companies are apparently still on the colonial system too: one shade fits all. It doesn’t. Why in the fuckety fuck don’t they make them in colours? People who are using these things have gone through a big change in their life, they aren’t dead, and many of us refuse to start walking about in ugly ass smocks or shirts 2 sizes too big to try and hide them, and we happen to like colour. A range of solid colours would be good. Good in every way, because colours are cheerful, and they tend to make people feel better. It’s not enough I get to deal with a colostomy, I have to deal with deadly ugly and depressing too? No, I refuse. I also refuse to be complicit in helping medical supply companies keep the stigma of such procedures alive and well. Who in the fuck wouldn’t be trying to cover up that level of ugly? So…

© C. Ford.

enter Sharpie Markers. :D A couple of the bags are gessoed, a couple are not. The markers need a small amount of dry time, after that, they’re golden, no smears. This is all quick and dirty, nothing fantastic, but it’s not deadly beige. Fuck beige, I never want to see it again. It should be struck off the official colour list. These are, of course, my out and about bags. I can’t be arsed to do this for when I’m just working at home, but when I do have to go out, I’ll feel much better about them. If you’re stuck with a deadly ugly beige medical appliance which is fabric, Sharpie makes a lovely range of fabric markers, and there’s a whole lot of fabric paint out there too, all of it stable and washable! I say it’s time for a full on revolt against the standard, racist, ugly ass beige medical supply sticks everyone with. Fuck that noise. Fuck cancer, too.

And a huge shout out to Sharpie for some great products!

Art Prep.

© C. Ford.

Getting stuff ready for all the hurry up and wait I have coming up. Besides, I’ve found if I’m in a waiting room, and start working, all of sudden, people want to do stuff on time. Kinda like magic, the highest annoyance factor always wins.

Cancer Chronicles 4: Pathology & Expression.

So…eventually, the path report makes its way to your door. Mine: Adenocarcinoma, moderately differentiated, with invasive feature and ulceration. Translation: invasive adenocarcinoma. There, that was easy. In my case, nothing I didn’t know already, but don’t get frittered by language. Look it up. If you have questions, write them down. Never be afraid to ask. The more you understand, the better you’ll be able to manage.

If ever there was a time to express yourself, this is that time. (You should be doing that anyway. Don’t wait til’ cancer comes knocking.) This is a good time to treat yourself a little. Doesn’t have to be major. I got a couple things at Big Lots:

© C. Ford.

You would not believe how incredibly obnoxious that pink nail polish is, dialed up to about nth. Everyone in the hospital loved it, kinda cheered us all up. Looks right good on the toes. Of course, for me, yet more art supplies. Got a lovely case of Daler Rowney pencils, which brings me to expression.

© C. Ford.

Draw. Write. Craft. Sing. Get your camera out. Make up new and awful fart jokes. Mortify your teenager by whipping your shirt open and saying “look, you were right, I’m full of shit!” Howl out your window and freak the fuck out of your neighbours. (They deserve it for those fucking fireworks after midnight anyway.) Something. Anything. I can’t quite do a nice bellyflop on my bed and play around with markers yet, but I’m working on it. Did you know you can get paper clips which are shaped like elephants? Make a chain of elephants. The list goes on. And on. Embrace all the moments. Even when you have a good prognosis in front of you, it doesn’t hurt to be aware of the clock. I was taking a whole lot for granted, and this has been quite the smack. And right now, I have a whole lot of rats who deserve a bit better from me, so I’m going to go and make them one hell of a salad. :D

Cancer Chronicles 3: The Naming.

It’s amazing how one thing can make such a big difference. In my case, stomach muscle. That’s sliced in order to do the colostomy, and it’s sheer agony to force that muscle into action, and there’s no choice about that, either. You can’t just lie flat for the time it takes to heal. Well, I suppose you could, but that’s not me, and I don’t like catheters. Anyroad, while you’re still in hospital, the mass amount of drugs helps to blunt the pain a bit when you have to get into a sitting or standing position. Once you’re home, it’s a symphony of contortion and pain trying to figure out the easiest way to get yourself sitting or standing. The injured and screaming stomach muscle, along with the stoma, feels incredibly heavy, you feel very weighed down. I’m 10 days out now, and the stomach muscle still feels sore, like it would after a heavy workout, but it’s a world of difference, being able to sit up, stand up straight, and be able to get into and out of bed without mass problems. I don’t feel weighted down, either. So. Much. Better.

I’m finding a need to hang on to my sense of humour with everything I have. Still on a lot of fart humour here. Makes me feel very juvenile, but that’s okay. Better than feeling ancient. So, as we’ll be living together quite a while, I figured it was time to name my stoma. Yeah, yeah, it’s silly. I don’t care. I have this very old name book, and I was flipping through, when a meaning caught my eye and made me laugh: helmeted battle maid. I looked down at my stoma, freshly bagged, and thought “that’s perfect!” The name? Grimhild. Seriously perfect. Out of curiosity, I looked Grimhild up – turns out in any incarnation, she wasn’t a nice lady type. That works too, because I am not feeling at all nice towards this part of me gone rogue.

Things get better when you get your appetite back, too. This took me quite a time, I didn’t have much appetite at all until a couple of days ago, and eating small amounts throughout the day/evening works best for me, rather than trying to do standard meals. I’ve also learned it’s best to be very fluid when it comes to sleep. This isn’t an option for everyone, especially those who want to get back to work; but I’ve found I often just can’t get to sleep when I want, so whenever I feel like I could nod off, I lay down and sleep for as long as I need. So far, that’s keeping me feeling fair energetic.

Now, I do believe Grimhild is making noises along the lines of ‘feed me’, so breakfast it is.

Cancer Chronicles 2: The Farting.

Cartoon by Mark Ewbie.

One thing you get to contemplate with a colostomy is being turned into a fart factory. I have not yet ventured out and about with my new arrangement; I’m waiting for the stoma swelling to go down one of these days. Even then, it will be interesting. The very first time you fart after having an ostomy is a strange sensation, a wrong sensation. The gas moves in the wrong direction, and it’s a bit of a shock, that first fart. You start to go into the autoclench before you realize that won’t help, and you have no way to clench on farts which are on the upside.

And then there’s the ballooning. If you expel a good amount of gas, your bag balloons up, and you have to bleed it to get the gas out. At least in this, you have a choice as to whether or not you’ll be inflicting your bag o’ farts on the unwitting. I have to say, it would be very mean to do so, but if it’s someone you don’t like, well…

You do adjust very quickly, after the first fart shock; when you feel one coming on, your hand immediately goes over your stoma while you try to look innocent. Right now, I can only envision myself out and about while clutching a pillow to my abdomen, so I think it will be a while before I make that first public appearance anywhere. Long car rides are a horrorshow of discomfort and peak level gas production. It’s recommended that when a long drive is necessary, that you pause and get out to stretch one or two times if you have an ostomy. There’s no particular reason given, but I am now certain this is so you can sneakily bleed the gas out of your bag without asphyxiating your driver. :D

Also, having an ostomy does not turn you into Pepé Le Pew – there’s no stench wafting about your person. As long as your bag is properly sealed, you’re fine. If you’re on the paranoid side about such things though, there are filters and such available. With an ostomy, you’re more in control of your farting, which is kinda nice. You also have the advantage of a weapons grade tool to chase away unwanted visitors, like Jehovah Witnesses. ;)

And today, I’m going to make things so much worse for myself, because I have a craving for refried beans. Well, it’s just me, the dogs, cats, and rats. And now, I can truly relate to He-Gassen. And I encourage everyone to relate their fave fart stories.

Cancer Chronicles 1.

CN: icky medical stuff. If you’re sensitive, don’t read.

Sore. Punctured. Bruised. Discoloured. I’m 7 days out from diagnosis, 6 days out from surgery. My protruding gut is still very swollen, and it feels so damn heavy. It’s difficult to walk with a straight back. My stomach muscles screech in protest over normal movements. Not so normal now. I feel…limited.

Today, I showered, and soaked off all the steri-strips and caked blood. Then it was time for a bag change. The instructions all say to rinse the old bag, then put it in a plastic baggie, seal it, then put that in a second baggie. They come with the stigma and shame included. I rinsed mine out and tossed it in the trash. There is a sense of revulsion; of a loss of control. I expect that will lessen with practice and experience. I don’t even know how to describe what it’s like, gently cleaning off an internal organ.

It hit early this morning – for the first time in my life, I feel old. Frail. I despise feeling this way. Somewhere, under the weight of this, is my usual self, but I don’t feel as though I can shift this density off. I know I need to eat, but I can’t find my appetite. I do have the perfect excuse to over indulge in ice cream though.

Patience is not a virtue I possess; I hate all the waiting. I won’t even see the radiation therapy Doc until 1/15. I just want this done. I want to rip out this part of me gone rogue, stomp it to death and get back to my life. I want my gut back on the inside where it belongs. This is all going to take so damn long.

My hair keeps trailing through my thoughts. How long do I try to keep it? Do I hope it doesn’t start falling out during radiation therapy? Can I manage to keep it until chemo starts? I don’t know, but the thought of losing my hair is bugging me more and more. I know it’s a minor thing; hair grows back. Still, this is what I get stuck on – having to surrender those 39 inches of hair.

I need to get my studio cleaned up, because I’ll have to start painting soon, it’s the only emotional outlet I have. Ideas flit in and out, nothing has settled yet. Feeling like broken pieces of coloured glass; there’s no coherence yet, the brighter colours subsumed by a muddied swirl of black, maroon, and purple, with threads of brightly spilled blood throughout.

I won’t be inflicting these chronicles on you all too often, just as the mood and need strike.

ETA: I put my rings back on. I was instructed to remove all jewelry for the colonoscopy, so I did, and then I ended up in hospital for four days. I thought about putting them back on when I got home, but just let them lie. I shouldn’t have done that, because nekkid fingers aren’t me. I think I need some new rings. Yep, I do.  The little things, they aren’t so little.