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.


Rick finally got the obnoxious asshole truck that everyone else has in this state. At least he genuinely needs a truck for his business. I felt that Harlan was an appropriate name for the obnoxious asshole truck. Harlan got the immediate stamp of approval from Jayne, who thinks it’s a fine ride indeed, what with him getting a whole seat to  himself. Oh, for those who can’t resist the name thing, before Harlan, we had two Fords and two Chevys. Now it’s three Chevys and two Fords. :)

© C. Ford.


I’m home until Monday morning, when I have to head back to town and the apartment. I’ve had an absolutely awful day, so I’m going to lay down with a book, and not set my clock. So, things will be late starting tomorrow (Saturday), but I’ll get things posted at some point, and try to answer neglected emails, too.

Pills, Anyone? (Admin Stuff).

Yes, that bottle is that big – 6 inches tall. Eeesh. This is half of the chemo drugs I’ll be taking during the next 5 weeks.

I’m so sorry to spring this on everyone so late, but I won’t be around at all tomorrow – I have to pack all this shit and get moved into my apartment. Snagged a nice one bedroom which is a two minute walk to the cancer center, where I’ll be doing the radiation treatments. I’ll be home on Saturday & Sunday. Today was not the start of radiation, supposedly I’ll start tomorrow. Apparently, the physicist and my doc didn’t quite figure out the proper dose and get all the programming done, so I have to get moved tomorrow and start treatment. Today, picked up the 2nd set of chemo meds (the stuff in the gigantic bottle), secured the apartment, did shopping for it, and found a truck we want to buy, so it’s going to be busy, busy, busy. I did get Hekate set up in the apt., so I’ll be able to blog from there. I’ll get back to regular blogging as soon as possible – should be all settled by tomorrow evening and back at it on Thursday.

Back, Sort Of…

This ^ is for Chigau – I already have the daisies!

Today is the first day I have not had to be in town all bloody day. Hospital, Cancer Center, Hospital, Pain Clinic. I have a host of new meds, some for the sciatica, which are helping, but basically, the most helpful thing there is rest, which I won’t be getting much of at all. I have been cleared for radiation & oral chemo. I picked up most of my oral chemo meds; the experimental drug I pick up on Tuesday, when I start radiation. The schedule is going to get crazy fast: I have to be in town Monday through Friday for the next five weeks. Blogging might get a tad erratic, to say the least. Rick and I will be staying in town on Tuesdays and Wednesdays.

There is some very good news: my tumor markers have gone from 11.9 to 3.6. Yay me. I wish to hell I could skip radiation. This week, I had my ‘cradle’ molded and fitted. Before you start radiation, you’re placed in the scanner, with a sort of plastic bag under you from your waist to past your feet. The edges are filled like a bean bag, and the technicians roll and mold this all around you, then the air is sucked out, and it forms a hard plastic mold. You lay down in this cradle each time you’re there for treatment. If you choose to have this done with shoes on, you have to wear the same shoes every time. I also had my tats done, not at all like an actual one. Picked up Aquaphor for burns and other relevant stuff.

Met my new oncologist, a very cheerful and enthusiastic person. We quite like them. I’ll probably have to be spending a bit of time in a wheelchair when in town, all the walking involved won’t do the sciatica any good. Oh, that’s right, I have all this paperwork I have to go through and start filling out a ‘pill count’ diary for the oral chemo and experimental; christ, I almost forgot all about that. My research person and I had a good moan about how pointless this type of paperwork is; I could be giving the pills to my dog and still fill out the paperwork like I was taking them and all, but this is going to be “drown yourself in paper” time. I also have to remember to take the experimental drug with me every other week, so a pill count can be done. Again, pointless.

Now, I’ll try and get a bit of blogging done!

Creatures of Brain Sorbet & More Admin Crap.

Creatures of Brain Sorbet, © C. Ford, all rights reserved.

Creatures of Brain Sorbet, © C. Ford, all rights reserved.

A little while ago, I decided I needed a break from Thorns, a sort of sorbet for the brain. As it turns out, a good decision – I need something to focus on without investment because I have been a wretched heap of misery since Thursday morning. Upon waking Thursday, I discovered I couldn’t walk. My left leg went out from under me, accompanied by a scream. Trying again, I could sort of lurch if I took teensy tiny partial steps. The primary pain was to the side and down from my kneecap (outside of leg), a site well known to me, as it’s long been a sensitive one. That’s where the sciatic nerve splits off into the tibial and peroneal nerves. Standing, with no weight on the leg at all, the pain radiated down to my ankle, which was slightly swollen along with my foot, and radiated up the back of my thigh to my arse. Oh good, my sciatic nerve is on a fucking rampage. (Yes, I still went out that night to get shots of the storm, lurching and limping and dragging myself, with the aid of morphine.) Anyone who has ever dealt with sciatic pain, you know what I’m talking about, painwise. People infected with the photography bug know you have to be at least 15/16ths dead before you miss a possible once in a lifetime shot.

The last time I had sciatica, it lasted most of a year. I am just so fucked. The pain has been very near to insanity levels. There has been much yelling, a fair amount of screaming, and a lot of collapsing into a pile of sobs. Thanks to chemo brain, it wasn’t until Friday night that I did  what I should have done immediately on Thursday morning – take aspirin. The aspirin helped much more than the morphine, helping to deal with the inflammation. It’s not helping as much now, but hey, at this point, I’ll take what I can get. I did have to fucking crawl into the lav on Thursday morning though, so I was bit preoccupied. Of course, another storm hit, and the circuit breaker which controls my studio lights keeps flipping off every hour or so. That means…stairs. Interesting to navigate when you can’t bend one knee without screaming. The breaker just went again. Fuck it, I’ll get it in the morning. Apparently, the pain and humiliation of the last four days wasn’t quite enough, as I have been called back into Cancerland early.  My oncologist (first one) insisted I meet  again with Cole (radiation doc) tomorrow (Monday the 18th). Just what I need, a nice long car ride to irritate the holy fuck outta my sciatic nerve. Ought to be fun. I suppose I’ll be getting my tats tomorrow.

Poor Jayne, he’s about a wreck, not knowing what to do with this screaming one second, racked with sobs the next person who appears to have eaten his regular person alive. Thanks to the confluence of morphine and aspirin, I can get 2 hours or so mostly pain free a day, but mornings are a nightmare, because after sleeping, I’m right back to where I was on Thursday morn.  This is one situation where I’m truly thankful to be an atheist. To think or say to myself: the universe is pissed I didn’t take the hint and die, so it’s going to keep dropping  big-ass bricks on my head is obviously sillier than fuck, and can be dismissed as a pity party moment. If I believed in a god though: god is pissed I didn’t take the hint and die, so he’s going to keep dropping  big-ass bricks on my head, I think I would be in a very bad and dangerous place which would lead to very bad decisions, like stopping treatment and placing myself in “god’s hands”, going the “god’s will” route.

It’s now time to stop faking it (puttin’ on that brave face).  I’m becoming increasingly fearful of showering, scared I’m gonna fall and kill myself in there. Think it might be time for some accessories in there, or at least a plastic chair I can sit on, or fall back on. Ah well, time to face the shower. Anyroad, I will be taking Monday the 18th completely off, I didn’t have time to schedule anything, either.  Going to sleep as long as possible, take much aspirin and morphine, wrap myself in pillows, and try to get through the day without breaking the fuck down, and I’ve felt much too close to a breakdown the last few days. As far as I know right now, I’ll be back to Affinity sometime Tuesday. I know my blogging has been on the shitty side lately, really sorry about this, I’ll make it up to you all.

A Case of Bad Timing.

This little gem arrived in the mail yesterday. Might be nice if they could put off the invite until I have officially and for sure survived cancer. I can only imagine what someone going through a relapse would feel, finding one of these in their mailbox. FFS, a little organization and thoughtfulness can go a long way. I can’t say I was any sort of impressed with it, and it shocked Rick, as his first thought was the same as mine: not yet a survivor, and we don’t need to be reminded of that one. Also in yesterday’s mail was a letter from Blue Cross, informing me that the Xeloda (Capecitabine) for my next phase of treatment had been approved, however, approval was not a guarantee of payment. That’s where they left it. I have a sinking feeling about this, that I’ll start, and then they’ll weasel out of payment. I don’t yet know what my dose will be, and while Capecitabine is on the relatively cheap end when you’re talking cytotoxins, it could still add up to thousands over 28 days. Cancerland, always full of surprises. <Insert near-fatal eyeroll here.>

© C. Ford.

Admin Stuff.

© C. Ford, all rights reserved.

© C. Ford, all rights reserved.

Much like Valleray, pictured above, I too am desirous of a long, long sleep. So, I’ll probably be around sometime Monday, but I don’t know when. Things will start eventually, and there’s plenty to peruse from this weekend, because I suspect most people had the sense to be out and about enjoying themselves rather than sitting in front of a computer. I will definitely be gone on Tuesday, because I need to get away from this house, this computer, this everything. We’re going to go travel gravel for a while.

CC Notes: I’m Not Sorry.

© C. Ford, all rights reserved.

© C. Ford, all rights reserved.

Okay. I’m going to start with reiterating that what I write here is about my experience with cancer treatment, and my feelings about it, it’s in no way general or applicable for painting with a vague and broad brush.

I am not sorry in the least little bit for not celebrating the first round of chemo being done. I am not sorry for viewing this as a completely non-celebratory event, nor for feeling this way. There was relief, and a fleeting sense of being free. That last one didn’t last long. As usual, the chemo has left me feeling half past dead and seriously dehydrated. So, I’m back again today for IV fluids. I’m only going because Rick refused to let up asking about going in for fluids. These days, he easily recognises the signs of dehydration, so I conceded. Right now, I’d rather deal with being half past dead than going back to 7. (In my hospital, the infusion suite is on the 7th floor.)

It doesn’t feel to me as if I’ve finished; there’s always something dragging you back, and even if I could manage to stay away from 7, appointments and schedules arrive by mail and phone, and of course there’s preparation for the next round of treatment. There’s also the knowledge that you’re going to get completely battered down again, which leaves you with a deep desire to simply stay the fuck away from hospitals altogether.

This all ties back in with the ever relentless positivity business. There’s the bell, which is in infusion/chemo suites all over, you’re supposed to ring it the same number of times as your cycles (in my case, it would be eight), while everyone else in infusion applauds; for me, that’s a hellish notion, and I was more than relieved in managing to slip out quietly. I learned that other infusion/chemo suites have a certificate/diploma thing, which is even worse than the damn bell. Most of us don’t require false encouragement, we all have our own reasons to keep showing up for treatment, even when we are past sick of it, and long to walk away and forget. You experience resignation soon enough in treatment, and simply getting through one phase is just that, nothing more. What most cancer patients are looking toward is the final door, that light at the end of the fuckin’ tunnel, when you get to walk away for real. For other cancer patients, there is no exit door, they’ll be in treatment until they die, and in such cases, it’s really callous and rotten to get all positive and celebratory over a single phase of treatment. Chirpy, trite sentiments do not help in the least, and they give people something empty to say without having to expend any thought on the actual person and their situation. Sometimes, there just isn’t anything to say, and that’s okay. Silences don’t have to be filled every single time, and silence is better than a perky positivity landing in compleat awkwardness.

This is not to say I don’t understand someone having joy over getting through one phase or being happy for me; it’s that I don’t feel that joy myself. I’m still looking at months worth of treatment and pretty much the rest of this year being dominated by cancer. I want my life back, and if I get that, then I’ll celebrate. Quietly.

And now I have to get ready to return to 7.

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.