Every now and then, a search string on my stats page will catch my attention. Today’s little eye catcher:
should i apologize for whitesplaining
I have an answer for you, O searcher:
Let’s hear it for Sister Morphine.
The photo I couldn’t upload on Wednesday.
Home. When you show up for your labs/oncology visit/chemo, this is something you don’t want to hear: “Your labs are terrible! There is no way in hell you’re getting chemo today! You need to be in hospital.” :Considers running away again: “I’m going to stop meeting you like this if you keep putting me in hospital.”
Yes, I was very dehydrated, severe diarrhea for 12 days will do that, and I am not a good fluid intake person. The main trouble was that my liver enzymes were through the roof. Uh oh. My oncologist pinned his hopes on a possible bile duct stone, as I’m lacking a gallbladder. I doubted this was so; outside the constipation/diarrhea combination, I had no abdominal pain. Turns out this was so, a scan showed everything normal in that area. So, if this is chemo induced, I get kicked out of the trial, and switched to ‘traditional chemo’. I didn’t want to just do that, and neither did my oncologist, because there could be a couple of other factors: my obviously over the top reaction to the miralax, and the acetaminophen in my regular pain meds, which was quite increased from normal dosage due to very increased pain.
The GI doc and a couple of others who came to visit on Wednesday kept asking me about acetaminophen, specifically Tylenol, like I swallowed half a bottle every day for a hobby or something. So for now, I’m not taking anything acetaminophen based, gone over to morphine, my liver count was trending down very quickly, and the diarrhea has finally slowed down, so next week I’ll do chemo infusion two, just the same, stay off the acetaminophen for the following two weeks, then we’ll see what the labs say. Hopefully, I’ll be able to stay in the trial. I think I’ll probably win ‘exasperating patient’ of the year.
What is clear is that I’ll have to do all the stuff right from the start, low fiber diet, lots and lots and lots of fluid intake. My ostomy end is still not working, so I’ll need to see my surgeon again, too. I’ll admit to being somewhat afraid of the latter, because if I hear ‘hospital’ again in the next week or two, I might start screaming. I hate being in hospital, but I will say, for someone who hates it as much as I do, the nurses are always happy to see me, because I’m not the miserable asshole with them or any other medical folk. I always engage with them, and turn my humour to ‘extra high’, and I never ever have cause to complain about my treatment.
On Wednesday, I didn’t have my MRI scan until evening. Pick up arrived around 6 pm or so, and when I wandered out to the hall, there was a large man, dressed all in black, bristling with gear, looked like a cop, which took me aback a bit. The gurney was black, with enough straps to please a mad insane asylum director. I looked at him, looked at the gurney, and said “I wish I’d known, I would have put on my super villain outfit.” So, I got a ride in an ambulance to the MRI center. My first time in one, kind of interesting, and a nice break from hospital boredom. I was happily drugged for this scan, so I was able to lie still without much pain.
Odd things: my veins, which have never been what you call cooperative (I’m a roller), seemed to go on full strike on Wednesday. In the morning, getting my labs done, the needle goes in, nothing. The needle gets moved about quite a bit, nothing. Took about 20, 25 seconds for blood to show up. We had a good laugh about that, because it was really fucking weird. Later, in hospital, it was one blown vein after another. Much much later, talking with my oncologist, he was annoyed my port wasn’t used. So, I enquired about that (I had completely forgotten about the port myself.) One of my nurses told me they stopped using ports, because when they used them for everything, labs and IV, the rate of infections went up, and they got all the blame for it. Naturally, they weren’t happy about that, so they just quit using them. Can’t blame them, I wouldn’t want to blamed for that either, especially when every precaution possible is taken.
Thursday was one very long day, into evening, of sit, wait, and try to deal with deadly boredom. I wasn’t released until late evening, and I had to fight a bit for that, so by the time we got home, it was very late, and I swallowed some morphine and collapsed. Still not feeling great, but I’d much rather feel lousy at home. Jayne gets seriously unglued when I go missing, so I had to spend some time with him; he thought I smelled funny. The rats were all “oh Great Rat, serving wench, you are home! Feed us all the good things!” Grace and Vala just stared at me, then the empty tea dish, glaring at my compleat nerve at not being around to make sure they had their tea and pastry.
So, things should get back to normal here, for at least a while. One lesson learned: even on a routine visit, toss the packed duffel bag in the car, along with the secondary computer, cords, all that crap…just in case. Normally, I’d just toss it all in the car and leave it, but we’re still in below zero temps here. That can’t go away soon enough.
From a while back, actually, when I was still feeling well enough to shop. A new pair of Ro-Search combat boots, 8 dollars at a local thriftshop, and a set of Mondrian Composition coloured pencils, from the sale table at the bookstore. Not my fave Mondrian piece, but hey, pencils. My fave is Avond; De rode boom.
© C. Ford, all rights reserved.
It wasn’t long ago I was moaning about the size of the chemo pump I get to be tethered to for two days per session. My friend who is also undergoing treatment told me their pump was more like an old Walkman, and electric rather than gravity fed, like mine. It’s also flat, rather than the silly giant capsule shape of mine. The above barely begins to cover all the different types, that’s not close to the whole page. Which leads me to wonder about standardisation, patient care, and patient outcomes. Whether or not you are paying attention to it, obviously everything about treatment has its effect on you, and user friendliness counts on some level, I’m sure. Of course, capitalism reigns supreme here in Ustates, and it’s quite apparent that there are plenty of chemo pumps all vying for attention and purchase. Obviously, more prestigious institutions with money behind them will have whatever is passing for the current state of the art and better design when it comes to patient point of view. Other institutions will have no choice but to go for cheaper options. And of course, there will be fingers, pockets, and the vagaries of salesmanship involved. Business is business, medical or not. What effect does this lack of standardisation have on patient outcomes, on the reputation of institutions? If I was given a choice, I would never choose the particular pump I’m saddled with. At the very least, I’d prefer something which could be carried at or below the waist. Oh yes, I’m sure they all get the job done, and the effect I’m talking about is certainly a small and subtle one, to be sure. Still, I can’t help wondering. Is this lack of a standard also prevalent elsewhere in the world?
ETA: I just didn’t have the energy to do this yesterday, but I talked about it in a correspondence with my friend in colon cancer treatment. Look at the people in that screenshot. Most of them with manic grins and poses, screaming “LOOK AT MY GOOD ATTITUDE! I HAVE POSITIVE!” Fuck that noise. I do not have a positive attitude. I don’t even have a good attitude. I have a shitty, cynical attitude, about most everything, and that certainly includes having cancer. If I lose that, I will be in serious trouble. My colon cancer friend is the same way. So, another little note: don’t go around telling a cancer patient something like “you have a positive attitude, and that’s the most important thing!” No, it’s not the most important thing. It’s not fucking important at all. What is important is whatever attitude your friend or loved one normally has is still intact and firing on all cylinders. If dark, twisted, gallows humour keeps someone going, don’t try to paint it pink with positivity. If razor sharp wit and observations keep someone going, allow that. It’s not up to anyone else to call the shots on what attitude will work best for any given person. As I said before, the person with cancer is still the person you know, they are still the same person they were before diagnosis; cancer is not a call to do a 360 on your personality and attitude.
I was putting off another chronicle for a while, which I’ll get to a bit later, but it turns out today is World Cancer Day. The whole thing is so damn Perky Positive that it exhausts me, but I will say this: If you’re putting off a standard screening, don’t. Grit your teeth, clear your schedule, and get it over with. It may well save your life. The people who love you will appreciate that. Yeah, it can be scary, no one wants bad news. No one wants that news. Nonetheless, Get. It. Done. If you’re stupid like me, and wait until pain shows up, it will be for the worse. If you’re a younger person, and put off something like getting the HPV vaccine, stop that right now, and Get. It. Done. If you’re a parent, and you have not given this gift to your child, Get. It. Done. It’s much better to get that news when you have a good chance of survival. I’ve already known too many people who were dead inside six weeks of diagnosis.
Okay, stories. I was going to put this off until after the next session, but I felt compelled to write today because of the whole world cancer day thing. This involves chemo, having an ostomy, and rivers of shit. If you would rather avoid such shit, now’s the time to stop reading. My next chemo session is the 7th this month, the last two weeks have been a nasty hell spent in a river of shit. I’m exhausted, have next to no motivation to do anything at all, punctuated by bursts of explosive anger. It’s a kind of madness. I’ve had the interesting experience of having constipation and diarrhea at the same time. I don’t recommend it. Chemo turned the shit in my bowels to stone, it felt like I had a belly full of rocks. I waited a couple of days, to see if anything would move, nothing. Yeah, okay, so I take the recommended softener/laxative stuff. That was a fucking mistake. I turned into a skin bag of diarrhea, a spout stuck on ‘pour’. Thing was, this wasn’t coming out the ostomy end, oh no. My belly was still full of rocks, could feel them. This goes on for days. Now I’m taking stuff for diarrhea. Doesn’t work. I’m now on day 8 or 9 of leaking. It’s slowed down some now, and some of the rocks have exited the building, but not through the ostomy end. Feels like all I’ve been doing for over a week is cleaning shit: off myself, off the floor, off the toilet, out of clothes, out of underwear. The only thing happening there is Grimhild burping out farts on a regular basis, and Grimhild has a new trick of rapid shrinking down to flush with my skin, then popping back out again. I’m sure I’ll be having fun with my surgeon again this week. Obviously, stuffing my face like a victim of starvation after chemo is not going to be an option, because I cannot face another two weeks like the ones I’ve been through. Hello mostly liquid diet.
And then there’s the pain. Oh Sweet Crispy Christ, the pain. I have an abnormally high tolerance when it comes to pain, but even I have limits. Why in the fuckety fuck did no one arm me with pain meds before chemo? Why in the fuckety fuck am I going to have to bring this up? Suffering is not good for your nonexistent soul, it isn’t good at all. Out of my current doctors, only the radiation doc was familiar with the direct and referred pain caused by a colorectal tumour, and I’m wondering why. The pain has prevented me from sleeping, it’s woken me up from sleep. It overrides everything and leaves me wanting nothing more than to be unconscious. A low down (no pun intended, but…) colorectal tumour makes your tailbone a center of pain, it spreads out over and through the ilium, the lower spine, and puts amazing, blinding pressure on the sciatic nerve. It’s so gosh darn fun to get up and think you’re going to walk, and have a lightning strike of pain take your leg out from under you. That kind of pain momentarily shocks you out from under the dismal symphony of pain which has already become oppressively routine.
Sitting at my desk, staring off into middle distance, I become aware that I’m nodding along to the rhythm beat of pain in my lower spine rather than the music playing. Time for inadequate meds again. It’s a piss always having to be medicated, too. Well fuck it, I have animals who would like to be fed, so I’ll go do that. For the record, rats totally win on the “oh gods, we are going to die right this second, pitifully, in your arms, if we aren’t fed immediately!” There’s nothing like walking in and seeing a group of boys standing up and reaching their little hands out like a chorus of Tiny Tims.
Tearful, in a good way. Voyager sent me a priceless gift, a beautiful piece of sea glass, from the 17th to 18th century. It comes from large glass barrels which were used to transport goods in the early days of shipping. It’s an unusual size and colour, and I’m astonished Voyager could give it up, but I am beyond thankful. Thankful is completely inadequate…I hold this ‘stone’ in my hand, this small tether to people and events of long ago, a piece of history, and it fills me with awe. Such a gift. I shall carry it with me, and use its power to transport me to another age when I need it, and I’ll be needing that a lot this year. Another thank you for the magnificent card too. You can read a bit about black sea glass here.
© C. Ford, all rights reserved.
Okay, I need to start with a disclaimer here. These cancer posts are to be able to inform, demystify, and for people to be able to talk about cancer, something which is still remarkably difficult to do. There is not one person who has taken part in these conversations who has said anything wrong at all; and I am grateful beyond measure for all the wishes and encouragement, which is appreciated beyond my ability to express it. So, I am not talking about anyone here at all, or in a specific sense. Most people who end up hearing “you have cancer” are going to end up angry at some point, and that anger will lash out, often in some unexpected directions. In my very short experience, I try to shelter those who care for me from it, but I am not always successful. While you realize it’s on the futile side to be angry with a random disease, it doesn’t stop the anger, and there’s plenty of actual things to be angry about.
Today marks my 36th day in from diagnosis. I have a minimum of eight months of treatment left, with at least two more surgeries awaiting. I really did not want the anger to come on so damn fast, because this ride is going to get much worse. But it’s there, itching under your skin from the start. People’s attitudes towards you change immediately. Some people ignore you; others treat you like a cracked porcelain doll; some people crumple; some people run from potential contagion of bad luck; some people immediately start whispering, which is weird as fuck; some people set themselves up as your hero; And the most dreaded: the leering clown faces wearing a rictus of positivity, stalking the halls like a latter day Death, wielding a smiley face instead of a scythe. In 36 days, I have already said not dead yet way too many times. How many times will it be by the end of this year? The only time it’s okay to talk about someone like they are dead is when they are actually dead, and well beyond caring about anything one might say.
On Monday, in the oncologist’s office, while waiting, bored, and standing because Butt Pain, I started poking about in cupboards. (Everyone does that, and the worst ones for snooping are medical people who find themselves in the patient seat.) Upon opening the cupboards over the sink, I let loose an exclamation, along with “I know what those are!” The infamous breast cancer swag bags, filled with pink. I read about these in Bright-sided: How Positive Thinking Is Undermining America by Barbara Ehrenreich. Welcome to Cancerland. At least with colon cancer, you get to avoid the aggressive, cheerful, infantile pink positivity which comes with breast cancer. Colon cancer is more low key, but you still find yourself stalked by the bad science of positive thinking. The pervasiveness of must have a good attitude and victim blaming is about as toxic as chemotherapy. I recently noticed, with dismay, that a couple of my chronicles were liked and picked up from my personal blog, and was highly unhappy with seeing these blogs writing about ‘being cancer preventative’, which is probably the most insidious method of blaming people for getting cancer. That is something to be absolutely fucking furious about. If you’re one of those people writing that kind of crap, telling people it’s on them to live a cancer preventative life, stop that godsdamn shit right fucking now. You are being a toxic, traumatic, obnoxious asshole, and you sure as hell are not helping anyone. Why? Because shit happens, that’s why. You can be a bloody saint and get cancer. Tiny children get cancer. People who exercise, eat right, don’t drink, and don’t smoke? Yeah, they get cancer too. The older you get, the more likely you’ll get cancer. So fuck you if you’re doing this brand of victim blaming. It’s random, it happens. As Charly notes in the comments, yes, you can certainly do things which may increase the possibility of certain cancers, but you cannot do one damn thing to prevent it.
Treatment. The one moment I emotionally embraced my oncologist was when he went on for a bit about how just barbaric cancer treatment is – he reminded me of DeForest Kelley playing Bones, stuck in a 20th century hospital, aghast at the barbarism of treatments. That was a good moment, because truth matters, and the truth is that cancer treatment sucks. In my head, I see myself chained, from the left and the right, being torn apart by two malign forces: cancer, treatment. It’s not easy to give people tacit permission to poison you and bombard you with radiation. Smart Monkey says: fuck, bad, run away! After you’ve beaten Smart Monkey into submission, you learn what my fellow traveler in colon cancer learned: all treatment is TRAUMA. It pings all the trauma: physical, mental, emotional. And you’re surrounded by people who truly want to do the right thing, and truly wish to help, but they don’t know what to do or say because no one ever fucking talks about cancer or treatment. It’s all hushed whispers in hallowed halls, with a chorus of puking and silenced rage behind it.
People. Oh, people. You’ll see and get the best and the worst, and everything in between. I know it’s difficult, but if you end up being the loved one of someone with cancer, treat them like you always do – yeah, circumstances have changed, but the person you care about is still the same person, and everyday normality and sanity can be hard to come by, so it becomes that precious to you. You can certainly offer to help with this, that, and the other, but if they say ‘no, got it’, let it go. We can’t just retire to the corner and wither, and we don’t need people encouraging that. Please, please, please, don’t keep repeating how great cancer treatments are now. They aren’t, and we know all that shit already. Everyone. Knows. That. Please don’t decide to treat us like dim 5 year olds. Rick has already picked up this habit of asking me “can I carry anything out to the car for you?”, as if I’ve decided to move house or something. All I ever have is my bag full of art supplies and paperwork, and I can still handle it. When you are in treatment, you have to remember and remind yourself to allow those who are caring for you to express such things, and to allow them to care for you. That can be very difficult, especially at the beginning, before you start feeling so diminished. It can be very difficult after you start feeling diminished too, because there’s going to be a fucktonne of resentment that you feel so fragile, ill, and diminished, and there you are angry again. As for all you friends and loved ones, please, please, please remember that this is a person you know well, your friend, your loved one, not cancer patient number whatever. You need to think of us as us. And whatever else, please leave the positivity crap behind, unless that’s something your friend or loved one is into. As for myself, I think the leap concluding that positivity is the opposite of stress is a very stupid leap. Stress is not helped by Perky Pollyanaism. As Barbara Ehrenreich writes in Brightsided:
But rather than providing emotional sustenance, the sugar-coating of cancer can exact a dreadful cost. First, it requires the denial of understandable feelings of anger and fear, all of which must be buried under a cosmetic layer of cheer. This is a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, but it is not so easy on the afflicted. Two researchers on benefit-finding report that the breast cancer patients they have worked with “have mentioned repeatedly that they view even well-intentioned efforts to encourage benefit-finding as insensitive and inept. They are almost always interpreted as an unwelcome attempt to minimize the unique burdens and challenges that need to be overcome. One 2004 study even found, in complete contradiction to the tenets of positive thinking, that women who perceive more benefits from their cancer “tend to face a poorer quality of life – including worse mental functioning – compared with women who do not perceive benefits from their diagnoses.”
Medical staff. Oh man. Well, you get all kinds. Me, I love the smart asses. I can’t even begin to say just how much honesty matters. Unless you have a specific reason to do so, don’t treat all your patients like they are somewhat stupid toddlers. We are all individuals, with different reactions and actions. It doesn’t take much time to assess whether or not a particular patient is well up on knowledge or not; whether someone is a bit quicker on the uptake or not, and so on. The condescending pat on the head treatment doesn’t do anyone favours. We aren’t dogs, waiting to wag our tales at you for a job well done. Please, I beg of you, if you work with cancer patients, don’t pretend you know what treatment is like unless you’ve undergone it yourself. That’s much more likely to make a person very angry, and find yourself wanting to shove a chemo pump up their arse, nostril, or other convenient orifice. Humour is great, and often helpful, but there are times when you’ll be able to tell, right away, when someone is just too damn exhausted for a sense a humour. Let us take a nap instead.
For all people dealing with a cancer patient: when it comes to anger, fear, anxiety, or all three: let us complain. Let us yell. Let us throw some shit at the wall. Whatever. Please, don’t try to talk us out of our anger, fear, or anxiety. It has to be dealt with, and trying to ‘cheer’ us out of it, or refusing to acknowledge it, or our right to both the feeling and the expression, that doesn’t help. You don’t have to fix it. You don’t have to make it better. You can help by allowing, by listening, by commiseration, or even yelling along. On the caregiver’s side, it’s not easy listening to such a litany, over and over, any easier than it is listening to your loved one puking their guts out, or crying quietly, or pushing food away. Being a caregiver sucks, too. All you caregivers, you need a caregiver yourself, or at least someone who can provide you with respite now and then. Don’t be afraid or ashamed of needing that, or simply taking time to be yourself for a while, with no demands on you. No one’s going to give you a reward for being a fucking martyr, and the person in your life with cancer doesn’t want that. It’s quite alright for you caregivers to get angry as hell too, and fearful, and anxious. Cancer isn’t fun for anyone. Patient or caregiver, if you think counseling or therapy is a good thing for you, go for it. If you don’t, then don’t. If someone is not interested in therapy or counseling, don’t push it. We know what will and won’t help us.
I’ll probably think of more stuff later. Right now, gotta go give some love and food to my animals, and they are grand. They don’t care if you have cancer, they still love you, and embrace you, and treat you like the household god of food and doors you have always been.
Got to disengage the giant capsule today, yay! Wow, that goes a long way towards feeling normal again. That chemo pump has a terrible weight to it, which has nothing to do with the physicality of it. Okay, this chronicle is mostly pictorial. I’ll caption what’s going on.
Now for more tea and something to eat so I can take my dexamethasone. Oh man, it is so nice to have that thing off me. Your port area and shoulder will be a bit sore, treat that part of yourself gently.
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.