Cancer Chronicles 22: Ten More Days.

All the stuff. © C. Ford, all rights reserved.

All the stuff. © C. Ford, all rights reserved.

Recently, I’ve disappeared for a bit due to treatment; I’m afraid I’m going to be quite scarce over the next 10 days. I did have an excellent couple of weeks when I started radiation, and I remain grateful for that. If nothing else, that small period of time reminded me that a day will come when I can reasonably expect to be okay every day.

As for now, I’m dealing with being slammed with all the side effects. Palmar-Plantar Erythrodysesthesia has set in with a vengeance, making everything much more difficult. It’s very painful to walk or to even type on a keyboard. My fingers alternate between being completely numb or exceedingly painful. I did have a lot of numbness in the feet for a while, but they seem to be stuck on the ‘painful as hell’ setting for now. The hydrocortisone cream is for the fingers and toes, and it helps a bit. Had to give up the evening walkabouts because of the PPE and sciatica; and my fingertips hurt like hell dealing with my camera, so basically, I’ve been sitting like a lump on a log. I have been trying to get at least some artwork done, but that’s been quite the challenge with these fucked up fingers, so progress in that area has been a snail’s pace. I’ve also spent too many days bent over with severe abdominal pain, which gives rise to severe back pain, yada, yada, yada. I have a bunch of new meds to try and control everything, and had to switch anti-nausea drugs yet again, as it turns out that phenergan (promethazine) speeds up emptying of the stomach, which results in very frequent trips to the lav, when I need all that jazz to slow down. So now I’m taking compazine. The first dose was today, so I’ll see how that works out.

I have gotten through most of my treatment without major mouth sore troubles, but the 5FU got its way this time, and my mouth is a mess. The liquid lidocaine helps, oh but I don’t like the way it tastes! The lidocaine jelly pictured above, that’s for anal use. That part of my body is one sore, tender, burnt mess. I also have an aquaphor/lidocaine blend for that area. All of anus problems are down to radiation, everything else is from the Xeloda. The 5FU didn’t give me much of a problem when doing infusion chemo, while this prodrug form has a much more serious effect on me.

I think my level of fatigue throughout radiation has been better than most; I haven’t felt overwhelmed much, but I have needed more sleep lately, and I’m going to go ahead and indulge that need for the rest of radiation. Every day does see me deeper in Chemorad Space, which isn’t helping at all, I’m easily distracted, zone out constantly, and have a lot of difficulty concentrating on any one thing. It’s odd, getting such intense effects from this form of the 5FU. Naturally, I’ve been told most people have the opposite experience. Just call me contrary.

If I still had a lot more radiation to go, I’d no doubt be looking at a push back because of all the side effects, but both of my oncologists have been playing cheerleader, it’s only 10 more days, “you’re very brave, you can make it!”, which I have to say did make me laugh. Now, if I could just get a drug which would give me my brain back, I’d be in pretty good shape.

As usual, if something else occurs I should have included, I’ll do an ETA in the next day or two, and try to get stuff posted as well.

ETA: PPE is very unpleasant, and unfortunately, there isn’t much to do about it outside of not taking the offending agent anymore. In my case, that’s the capecitabine (xeloda).  Your fingers and hands will swell, as will your feet and toes. (Xeloda also can cause facial swelling, but that’s not related to PPE). Your fingertips will often be bright red, sometimes fading to a dark pink. Your fingertips and soles of your feet will be excruciatingly tender, and just about everything is terribly painful on contact. Walking is painful, and I’ve found it easiest to settle on very comfortable sneakers with a good, cushiony sole. Your nail beds will be very sore indeed, so standard methods of cleaning nails have to stop, it’s best to get them clean by soaking in water. Your fingertips will alternate between “oh gods hurt!” and completely numb, which is challenging on a few fronts. Dropping things involuntarily will happen when you go numb, so it’s best to leave things like polishing your nails to someone else, unless you don’t mind making a mess with nail polish. Also, if you’re holding a drink, use both hands. You may notice skin discolouration on your hands and feet, that goes with the territory.

Have one of those little rubber gripper mats in the kitchen, as getting off even the simplest of caps can be painful and daunting. If nothing else, grab a washcloth to cushion your fingertips when trying to get caps off pill bottles, etc. Taking an anti-inflammatory like celecoxib every day can help a little; I don’t think the steroid cream does much, but you should keep your fingertips and toes lotioned up, so it won’t hurt to use it. Under all the swelling, the 5FU is still eating away at your fingertip fat pads, so stay well hydrated. Whatever your intake, it’s probably not enough. I know mine isn’t high enough now, so I’m scheduling more IV fluids. Basically, you need to stay well moisturized, inside and out. PPE won’t magically go away when you stop the chemo, it takes a couple of weeks for it to disappear, so you’ll need to take extra care for a while after you get to stop.

Cancer Chronicles 21: Goop, Goodies, & Other Stuff.

Lots of photos with this one. I’ll explain in the captions.

The prescribed goop for malnutrition. Yeah, I know, Nestle. I'm not happy about that.

The prescribed goop for malnutrition. Yeah, I know, Nestle. I’m not happy about that.

My first goodies bag.

My first goodies bag.

When empty, a useful caddy, good for the shower.

When empty, a useful caddy, good for the shower.

Reach Program Stuff.

Reach Program Stuff.

Okay, let me start with the good stuff. Right now, this is the best I have felt in the last long seven months. My energy is great, I’m sleeping well, can’t stop stuffing my face. I gained 3 lbs, putting me at 95 lbs now! This is not to say it’s all been roses without thorns, but I will take every single good second I have, and be very happy. As far as the radiation goes, everyone is rather surprised that I’m over two weeks in, and not having any side effects. Again, I’ll take every day I get without them, and be happy about it.

I do need to correct one thing from the last chronicle. At that time, I thought the swelling I was experiencing was due to the veliparib. It’s not. Turns out that one of the less common side effects of the Xeloda (Capecitabine, oral chemo, converts to 5FU in the body) is swelling of the feet, ankles, and face. My facial swelling is limited to under my eyes, but that’s bad enough, makes me look like a bloodhound. The feet and ankle swelling, that’s a whole different matter. The swelling was getting severe, and you get numbness with it. It’s not fun to walk when you can’t feel your feet. I did accidentally find out that the longer amount of time between morning and evening doses helps to decrease the swelling. There’s nothing to do for it, except to have your dose reduced if it becomes too much. Mine is under control for the moment, and not having to take the xeloda over the weekend helps a bit too.  Another less common side effect is a runny nose, so if your nose starts inexplicably running, look no further.

Radiation makes any existing inflammation worse, if your radiation is targeting the area of inflammation. I was warned by my doc that my sciatica would be made worse, and yeah, it’s all woke and angry again.  Celecoxib (Celebrex) helps enormously, and can keep you walking around without wanting to scream. The morphine helps too, but it’s the anti-inflammatory which makes the difference.

Naturally, in the midst of all this happy “rats below, I feel…normal!” something had to intrude, enter Grimhild, who has been an absolute beast the last week or so. She’s busy trying to make a break for it yet again as I sit here typing. And what’s an unruly ostomy and abdominal pain without massive butt pain joining the party? Ugh. Shouldn’t last more than a few more days, I hope. These things come and go at intervals.

Okay, back to more fun stuff. After my radiation scan, I get a massage several times a week, which is very nice, and I’m going to miss that. My massage therapist is a lovely person, fun to talk with and with a fine sense of humour, too. Pretty much everyone at radiation has a good sense of humour, which is not one of those things you think about, but it makes one hell of a difference to your days. Last week, I met with the nutritionist, and got a lot of helpful suggestions, and a scrip for goop. It’s tasteless, and can be added to pretty much anything. When I’m at the apartment, I blend chocolate milk, boost, and ice cream with it for a shake. The goop alone is 330 calories, with added protein. Here at home, I just mix it in a tall glass of chocolate milk. My nutritionist told me I’ll have to have 2,500 calories to gain a pound, so it’s going to be a while before I get anywhere near my normal weight, but I’m working on it. If I just drink the goop once a day, it gives me a bit over 2,300 calories per seven days.

I’m also in dire need of strength training, which will aid my muscle mass and help me to keep the weight on. We’ve talked recently about joining a gym, but of course, we’ll probably only be able to attend one day a week, but that’s better than nothing. More on that in a bit. I was also very relieved when my nutritionist told me I didn’t have to pile on the meat, because I still tend toward queasy when it comes to a lot of meats. I have been craving steak lately though, and had one last night, and it went down fine, so I’ll keep eating steaks until I’m tired of them, and move on to something else. Even there, I’m fussed. The only steaks I like, regardless of cut, are those that Rick cooks. He cooks them perfectly, with the exact spice and flavours I like.

One thing which is made abundantly clear all through treatment is that you have to eat whatever you can, no matter what type of foods that might be. Early in treatment, especially during infusion chemo, don’t worry about nutrition, just eat as much of whatever you can. Also, pay attention to cravings, and give yourself whatever you end up craving. If all you can get down, for example, is ice cream and pizza, go for it. Don’t let anyone boss you around on food, either. With all the weirdness of side effects, you’re the only one who knows what you can handle and what you can’t.  Of course, your caregiver knows all this too, and make sure no one is trying to boss them around, telling them how and what to feed you. Politely or rudely, tell such people, well-intentioned or no, that it’s none of their business, and they don’t have the slightest fucking idea of what they’re talking about, so shutting up is the best option.

I also met with the person who runs the Reach Program, and she’s wonderful. Lively, and very fun to talk with, which is a good quality in a counselor. We got to talk for a bit, and she is a survivor, breast cancer in 2008. We had the same oncologist. She’s the one who gave me my goody bag, and gave me all the info on support groups and workshops. I did talk to Rick about going to the caregiver group, at least once, because it makes such a difference to talk with people who know what it’s all about. I might go to a group session or two myself. I am going to go to the ‘look good’ workshop because free cosmetics. Hundreds of dollars worth. That’s a lot of art supplies. I might even use some on my wrinkles. :D The counselor also told me about the Live Strong program at the Y, which we’re going to register for. The next one, if we get in, runs from September to December, two days a week. It’s you and one family member or friend. They have trainers who specialize in cancer patients, and all the exercises are specific to what cancer patients most need. After the class, you’re free to use the other facilities. Swimming! Hopefully, we’ll be able to get in, the classes are very limited, in this case, it’s 12 initial people, and their person. Whether we get in or not, the need for exercise is vital at this point, so one way or another, it will get done.

The one thing you can’t avoid with radiation is the fatigue. That’s the biggest side effect, and it will hit sooner or later. Just deciding that schedules and alarm clocks had to go for now has made a big difference for me. It’s more relaxing, and it lifts a pretty big burden off your shoulders, even if it didn’t feel like much of a burden before. Getting enough sleep is crucial, and even more so is that sleep is actually restful and restorative. If it isn’t, you definitely need to have a good talk with your oncologists, and find a way to resolve that problem. Whatever helps you to relax and refuel is good – whether that’s spending time in a hot tub, a spa, having a nice glass of wine or something else while watching the sunset, decadent hot chocolate with a stack of books and a pile of quilts, going canoeing, whatever, do it. Every thing you can think of which makes you feel relaxed and rested, it’s good for you, and this is the best reason you’ll find to indulge. This is very necessary to your health, so don’t go feeling all guilted out about or over any of it. It’s not just necessary for getting you through radiation, but this is restorative for the whole damn time you’ve been in treatment so far; it’s also adding needed strength for getting through the rest of treatment, whatever that might comprise. In my case, a rash of tests, a couple of surgeries, more tests, and four more cycles of infusion chemo. Just thinking about that shit is exhausting, so do what you have to do while you can.

It’s not just the physical fatigue all that will help, it will help with the mental and emotional exhaustion which is prone to hit during radiation. All of you needs rest and relaxation. Whatever is mental and emotional basketweaving, so to speak, for you is also necessary, and seriously helpful. Rick had a good time with that last week, when a couple of things came up with Harlan, needing to be fixed. He was telling me all about it, because we’ve always talked cars, and I’ve always been involved in the mechanical side, and he was having fun. It was really nice for him to have a day diving into some minor repairs which had a few challenging moments. This is important to remember too – you and your primary caregiver are two sides of a coin. I don’t know what it’s like to be a primary caregiver, and Rick doesn’t know what it’s like to be a cancer patient, but for all that, the stresses and problems you both experience have a whole lot in common, and caregivers need rest and relaxation too, just as much as you do. Having mental fun and time out is crucial for caregivers, and once more, if you happen to know someone who is a primary caregiver, please consider giving them respite in one way or another. Take them out, give them a gift certificate for a massage, or a fun time out, whatever you can manage. You’ll be doing more than you’ll ever know.

I think that’s it for now. As always, if I think of more stuff, I’ll do an ETA (Edited To Add) in the next day or three.

ETA: about the Xeloda…my chemo brain has been much worse than it ever was during infusion chemo. Naturally, I was told this was the complete opposite of most people’s experience.  If it happens to you too, at least you’ll know you aren’t alone. Rick and I came up with Chemorad Space™, which is primarily where I reside now. When I go blank, I just shrug and say “chemorad space”.

Cancer Chronicles 20: “Hi, I’m Five Weeks.”

© C. Ford, all rights reserved.

© C. Ford, all rights reserved.

Pictured above is the Linear Accelerator I’m in Monday – Friday, along with two of the fabulous techs who do all the work. Here, they are placing my cradle on the slab and getting it ready for me to insert myself. Once on the slab and in the correct position, it’s elevated quite a bit so that it slots in between the four arms of the accelerator. The slab stays still, it’s the arms of the accelerator which move around you. It’s all very interesting, and you can watch a green laser light pulse across one section of the ceiling. I don’t watch anymore, because I’ve found that the revolving arms set off nausea, which I most seriously do not need these days. The treatment itself goes extremely fast, it’s maybe around 10 minutes. You almost spend more time getting positioned into your cradle.

Oral chemo paperwork.

Oral chemo paperwork.

Radiation Calendar.

Radiation Calendar.

Okay, well I have to go back a bit here. Radiation started on June 27th. The day before, we had secured an apartment which is barely a two minute walk from the Bismarck Cancer Center. Sanford has blocks of apartments all clustered close to the area of downtown they have eaten alive; an apartment costs $400.00 a month, which is by far the cheapest option for most people, a great many of whom live well outside Bismarck. If you’re there for more than month, the cost is prorated for whatever length of time you spend. I was mostly moved in by the 27th, and the first scan is the one which takes the longest, everything has to be checked over several times, adjustments made and all that. You’ll be on the slab for around 30 minutes. After that, the treatments go very fast. You’ll spend more time in the waiting room than anything else. One thing which makes it all go quicker: clothing. Yep. If you wear something which has no buttons or zippers, and can be easily pushed down (or up, whichever direction you’re being zapped), you can just go straight in, kick off your shoes and get into your cradle. I find having to change into gowns annoying, so this works well for me. Hell, if you’re like me and you find yourself with a two minute walk to your scans, wear your pyjamas! I’ll be seeing my radiation oncologist every Tuesday, along with my regular oncologist over at the main hospital. You still have to have labs every week, and you’re given a lot of latitude as to when you want to do that. Radiation is great about giving you a set time of your choosing. As you can see, we prefer late afternoon. You also have meetings arranged with a nutritionist and a massage therapist. Free massage!

A couple of days after I was ensconced in my apartment, I heard Brandon moving some people in next door. We later met on the stairs: “Hi. Radiation? Yeah, me too, I’m five weeks.” “I’m nine weeks.” This is what your conversation comes down to with other cancer patients. In the waiting room: “How are you doing?” “Still here, not dead yet.” “Me too. Feels like dead some days.” “Yeah, a lot of days.” Cancerland has it’s own codes and lingo; doesn’t take long to become fluent, or to put the cancer first, either: “Hi. Colorectal cancer.” “Hi, pancreatic.”

Onto the purely miserable fucking stuff, and scary stuff (for me). I started taking the oral chemo (5FU, same as what was in the pump; the pills convert to 5FU), and the Veliparib (trial drug). The 5FuckYou is an agent well known to me, and I know which side effects can be laid at its door. As you can see on the chemo paperwork, there’s a ‘skipped’ on the Veliparib for Friday evening, and I have to record a skip for this weekend, too, as I’m supposed to take it 7 days a week, not 5 like the other. I was having a great deal of trouble the first week this all started. A profound nausea set in on Wednesday, and I wasn’t sure what was causing it. Until I see my oncologist on July 3rd, I’ve stuck with taking dramamine for nausea, as it’s worked well enough and I can’t take the Zofran. It stopped working well. I’ve had to take a great deal of it just to keep from puking my guts out constantly. Day by day, the nausea was getting worse. I did not have a single moment where I felt well. I’m supposed to take my chemo with food, and I could barely choke down 3 tablespoons of cereal before I took the meds. There was also an intense bitter taste in my mouth and throat, and it’s all I could taste. It got to a point on Friday that I could not even drink the required water, as trying to do so had me puking. (For my particular cancer, a full bladder is wanted for the scan, as it helps to push the intestines out of the way of the bits being targeted.) I still wanted to go grocery shopping for the apartment, and holy fuck is it ever hard to shop for food when the only thing on your mind is “can’t puke, can’t puke, can’t puke”.  I decided to skip the Friday evening Veliparib, just to see. As anticipated, the 5FU didn’t cause me any problems at all, and by the time 11pm rolled around, I was able to eat a little bit. Woke up this morning, and ate a pastry right away, no nausea, no problems.

Unfortunately, this means I’ll have to drop out of the trial, I simply cannot deal with such profound nausea. I’ve dropped to 92 pounds, and look every bit the starvation victim. My ribs and spine stand out in sharp relief, I don’t have an ounce of fat anywhere, and I’m simply too concerned about that to try and come to terms with the trial drug. I feel bad about dropping out at this point, but my overall health has to have priority. I’ll see my research person on Tuesday, along with everyone else. There’s a slim possibility that another anti-nausea drug might help me to cope, but I don’t know that I’ll want to try. The Velaparib was also causing a fair amount of swelling in my face, ankles and feet. We definitely don’t get along.

That’s about it for now. As usual, if I think of more, I’ll edit to add. ETA: There are a couple of videos linked in the comments which show how a linac works.

Cancer Chronicles 19: Eight!

© C. Ford.

© C. Ford.

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

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

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

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

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

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

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

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

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

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.

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.

Cancer Chronicles 16: I Just Don’t Care.

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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.

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 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.
Infection.
Tiredness (fatigue).
Hormone changes or hormone treatments.
Other illnesses, such as diabetes or high blood pressure.
Nutritional deficiencies.
Age.
Depression.
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.

Cancer Chronicles 12: Creeping Isolation.

Paper, paper, paper.

I don’t know if I can explain this one. I’ll do my best. From the start, you’re inundated with information and a storm of paperwork at a very fast rate. If you’re someone like me, knowledge is good, it provides a foundation to anchor yourself on, but even then, you’re in a situation where this is all coming at a furious pace right after diagnosis. While a part of you is still struggling to process what this is going to mean, in terms of your life, your self, the rest is trying to take all this information on board. A good deal of it penetrates and makes it through, punctuated by periods of what my friend describes as bluuuuuuuur. Those punctuated periods are a very good reason to be sure you have someone with you who can act as advocate; another brain to absorb information, to scribble notes, record, whatever. Later, this acts as an excellent check: “Did they say…?” to get confirmation of what you think you heard. For myself and a lot of others, the shock has not yet set in, but when it does, it tends to fuck your memory up a tad. In the meantime, the information keeps flowing at a fast rate, every time you’re back in for a couple of weeks.

For me, there was the draining task of looking up every single cytotoxin I was going to be given. There were the pages and pages of side effects, finding out what the hell Urea Cream is and where to get it, in case of Hand-Foot Syndrome (Palmar-Plantar Erythrodysesthesia), and so on. (My thanks to my friend for all the info on the cream.) There’s a vast need to be prepared, JUST IN CASE looms large in Cancerland. While you find yourself preoccupied with all the intricacies and complexities of Cancerland, long before you realize it, there’s a whisper of a cocoon being woven about you. A cocoon of isolation. There’s a part of you which starts withdrawing immediately, but oh so quietly. Takes a while to realize the internal tug.

There’s a tremendous cost in emotional energy when it comes to cancer. The people who love you and care for you develop a low level desperation for normal times, a normal moment, the normal you. It’s impossible to not respond to that need, even when it costs you. Many of the people who surround you need to feel needed, and that includes most of your medical folk, and there are times it feels too much to even acknowledge them. Right now, my medical people regard me as knowledgeable, witty, and engaging. There is one hell of a cost to finding that person, forcibly fishing her out, and donning her for the benefit of others, especially when I feel so…lacking, in everything. That’s when you start finding it easier to simply sink inward, into isolation. You do feel very alone in treatment, because as much as people might love and care for you, they are not in your situation, and you don’t gain a true understanding of treatment unless you get to be in it. That’s even so when it comes to all the medical people who deal with cancer patients every day for years on end. Because of that, I think withdrawal into isolation becomes seductive because it seems to be a sort of armor, a protected place, away from everyone else’s needs; away from calculating the expense of answering the needs. There are times it’s very difficult indeed to ignore that siren song, and it always hits you when you are feeling at your most vulnerable, those moments when you think “I can not take anymore.”

This isolation also twines around the closest caregiver, and I cannot emphasise enough how important it is for people to be there for the primary caregiver. Caregivers tend to be forgotten as everyone clusters around the “cancer patient”, but a primary caregiver is also going through shock, and trying to figure out how to cope, and they have all the same information overload and everything else to do. To borrow from the advertising world for a moment, Have you hugged a caregiver today? Or given them a day of respite? Taken them out for a beer or a movie? If you really, really want to be nice to a patient or a caregiver, get a gift certificate for a massage.

ETA: In the comments, Nightjar had this to say about being a caregiver, and I can’t emphasise this enough, either:

Yes, and then there’s the goddamn guilt, which you know isn’t rational but it will creep up every now and then. “Am I doing enough?” “Is there something I could do that I’m not doing to maximize comfort and chances of treatment success?” This tends to get worse when well-intentioned people decide to give “advice”, usually to ask if you’ve been giving enough of miraculously-healthy-food-X or if you’ve been preventing the person with cancer from eating very-unhealthy-food-Y. I know intentions are good, but really, when you hear this kind of thing repeatedly what it begins to sound like is “you are not doing it right”. And you feel guilty because last night you were too tired to cook and just threw a pre-baked pizza in the oven. And it’s all very stupid anyway and it pisses me off because 1) Yes, I already know nutrition is important, my background is in biochemistry, even if it wasn’t, I would have heard it by now don’t you think? and 2) WTF, I’m not caring for a baby, my mom eats whatever she wants to eat and I’m not going to “prevent” her from anything. Seriously, people need to learn that just saying “I’m sorry, let me know if I can help you with anything” is fine and is enough. There really is no need to follow it up with anything if you don’t know what else to say.

Yeah, don’t do that kind of thing. Unless you’re a fellow caregiver who might be able to offer a really good and helpful suggestion, keep your ideas to yourself, please. We all know about pink positive crap, we all know about the diet this, diet that crap – it. does. not. help.  Also, in case you might not know, cancer treatment is bristling with nutritionists, that’s part of treatment too. Just as it’s important to remember the person with the cancer is still the same person, that applies to the caregiver, too. Resist turning people into “The Cancer Patient” and “The Caregiver”. Also, as someone who can be world class stubborn when I want to be, I’ll confirm that no, you won’t get anywhere trying to boss someone with cancer around when it comes to food. No one knows better than we do about that, and as I mentioned, there are times we plan to misbehave, and we’re willing to pay the price for it. You go eight months without your favourite food or treat. Don’t want to do that? Neither do we. Another word about diets: specific cancers call for specific diets, there’s no “one fits all”, which is why you have meetings with nutritionists for your particular cancer. If you’re a bystander to all this, trust me: you do not know best about diets. More than anything, a caregiver will appreciate respite, a nice gift, an offer of help, left right there.

I wish I knew how to adequately explain what it’s like to be able to talk with someone who is undergoing the same treatment you are, for the same type of cancer. Weirdly, it’s rejuvenating, because you can just talk. You don’t have to explain anything at all. It’s a different sort of normal; it feels amazingly normal because you can just talk, just as you would about any other thing. It’s Cancerland normal. Unfortunately, I imagine it’s a rare thing. My friend and I are damn neared twinned on every aspect of our cancers and treatment. Being able to talk with her has, to a great extent, kept me in the present, even when I’ve been feeling at my most exhausted and disheartened. I can’t not respond to her, because it’s simply too important to keep our metaphorical hands linked. She is the only one who knows.

This is not to say that all the other wonderful people in your life don’t do anything to help you normalise out, or lift your spirits in a myriad of ways, they do. Every pull out of isolation helps, every distraction helps, every serious discussion, and every silly discussion helps. Stories help. They all help to hoist you out of that internal spiral, because you do love every person back, and you do need them. Everyone who hangs out at Affinity does me good beyond measure; one of my greatest pleasures is how the conversations on the chronicles weave about, full of stories, expansion, humour, advice, suggestions, ideas, and compassion. Being there for someone with cancer is everything. Fucking everything. All that said, there are times when it feels like responding is going to be impossible to achieve, it’s simply a mountain much too high to climb, and you’re out of breath, energy, and the will to continue on. In the end, you do find yourself able to respond, and you slowly realize you feel better for it.

It’s not that we don’t know there’s an end in sight, but that end feels like ——————————————————->, too far out of sight to rely on in any way. The dreary routine of treatment gets to you. The fact that you just start to feel well again is right before you get infused again, that’s a piss and a half, to say the least. I’m right now starting to feel okay again, and chemo is today. Can’t be fuckin’ happy about that one. You have to develop new habits, fluid intake if you’re bad like me; everyone has to adjust their diet. These things truly help, but it can be hard to gauge how much, it often seems they aren’t helping a hell of a lot. The first time you misbehave, and you know we’re all gonna do it, you’ll have that message driven home, usually in the form of something you really don’t want to see, like ramped up diarrhea. I have officially decided that if I get addicted to anything, it’s gonna be fucking Immodium.  I literally cannot make a move without it. That’s dependence. :D

That’s all I have for everyone today, I’ll be back late, and probably have another collapse straight into bed when I finally reach home, so FUCK CANCER, KICK ITS ASS, and everyone? Take care of yourselves and everyone else. Take care of one another. And I can’t thank you enough for taking such amazing care of me, you all have my heart.

Cancer Chronicles 11: Home.

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.

Cancer Chronicles 10: Standards & Stories.

Google Images, screenshot.

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.