© 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.
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.
I wish there was a way I could give you about 15lbs of the spare Marcus I’ve got. I would selflessly do that.
That’s a really impressive piece of machinery. I bet it costs a metric shit.
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.”
That’s terrifying; it’s another way that the cancer consumes you. I guess if you manage to whack it back, part of recovery is regaining your sense of normality and self. I hope, anyway.
Thoughts and prayers!
Side effects of new meds are important info to learn.
Marcus:
Yes, it’s a fabulous machine, and they have more than one. I imagine the cost is in the stratosphere somewhere. I’m pretty sure I’ve been in every damn machine by now.
Yes, and yes. The cancer stays upfront until you’re all the way out. There are a lot of people who won’t see all the way out though, and for them, it’s a constant fight to shove the cancer back.
robertbaden:
Yeah, amazingly enough, I’m aware of that, I get questioned about them every fucking week, and have been for the last fucking six months.
Caine,
I’m on a couple of maintenance meds related to diabetes. A statin and metformin. Had to cut way back on the doses because of side effects. Would have been nice if the doctors had been more aware of them. It seems as if they became aware only after a lot of complaints by patients. Don’t know if these side effects were missed in the original studies.
Robertbaden, I’m sorry to hear that, but unfortunately, it’s not uncommon. I had been prescribed Zofran for nausea, and my oncologist didn’t bother to tell me it causes headaches, even though I have a life long history of migraines. It didn’t occur to him to say, and I didn’t find out until after I had one miserable week with the stuff.
My current situation is different, I’m in a clinical trial, and everything is tightly monitored. I have to go through a very long questionnaire every week about side effects, and if I stay in the trial, I’ll be doing that for 3 years. Also, I have labs every week, and those numbers control what happens; whether or not current doses of whatever are okay, if something has to be cut back, or if treatment has to be pushed back, etc. I’ve been doing this from the start.
I am sorry to hear that the trial drug gives you so much grief. The malady itself is bad enough without the cure piling on top of it. But as you say, your health is your top priority.
I am not sending prayers, but rest assured that I think of you a lot.
Fingers crossed.
Thanks, Charly. I’m sorry about the trial drug, I’d like to see it through, but the difference to how I feel today compared to last week? Night and day, so the drug has to go.
I’m sorry to hear, Caine, it must feel frustrating to have to drop out now, but better to have to let go of the trial drug than of the ones that are already known to work, right?
Still, fingers crossed for Tuesday, whatever the outcome of your conversation with your research person turns out to be.
Thanks, Nightjar. Yeah, I feel like I’m letting the side down, but if I keep on with it, I won’t be able to eat and I will end up dead, just not from cancer. I haven’t been able to stop eating all day, which happens after a week of almost no food. I’m straddling a dangerous line here.
I might give it one more week with a new nausea drug, but that’s not certain, and I can’t guarantee I’ll continue. As it stands, I’m not going to take anymore until I see someone on Tuesday, and that’s missing 9 doses.
Oh wow that machine is really wild. I had heard about these; a friend with melanoma was treated in one. It sounded pretty science-fictiony and looks it even more so, now that I can see a photo of it.
Damn on that drug but yeah, pretty important to be able to eat and drink… sounds like that was the culprit too and yeah it’s a shame, but isn’t this result part of the evidence that will help that drug move forward? I don’t know… I seem to recall that bad results are important too. And I would sure call that a bad result.
I hope your apartment is pleasant and easy to hang out in. That sounds so ideal, to be able to be so close like that.
Yeah, that doesn’t sound good. Veliparib is under study, starvation is guaranteed to bring about very poor outcomes indeed! As you say, your overall health is more important, and “killed by trial drug” wouldn’t make you a good data point for the trial either.
Just keep taking care of yourself. ♥
Kestrel:
Oh, they are really something to see. I wish I could get a shot with the arms fully extended. Maybe I can, the techs are pretty good about letting me loose with my camera. I wish I could just shoot straight up while on the slab, but you have to hold this ring while you’re scanned, kinda like a teething ring or dog toy.
Yeah, that’s important too, and I’m definitely a data point. Right now, today, I feel fine. Truly fine, and the contrast is even worse for that. I am also so damn tired of being sick. And there are all the odd things -- velaparib was also causing me olfactory hallucinations, I couldn’t get the smell of burnt coffee out of my nose, which wasn’t helping. That continued until last night. Today, it’s finally gone.
Nightjar:
Exactly. Rick is also unglued over the weight loss, and it’s much more important to him that I put some weight on than to finish the trial.
That kind of nausea would be bad for someone with more weight than you have, at your weight I’d have thought it was positively dangerous. Glad you can eat at the moment and that you aren’t smelling burnt coffee all the time either. Finding out which patients you shoudn’t give the drug to is just as important as finding out who it helps in a trial.
Jazzlet:
Yeah, that’s my thinking too. My weight should be 110, which leaves me trying to put on 18 bloody pounds, when I can’t even manage to get a few ounces to stick. A BMI of 18.5 is considered to be underweight. Mine is currently 15.3. I’m fucking worried.
I think you did what you had to.
The Linac machine does look quite futuristic as said. It would be interesting to see what kind of mixture of “new” and “old” tech it is. I gather there’s no actual radioactive material involved, it’s all electricity and x-rays.
Take care of yourself. My warm thoughts for you.
Ice Swimmer, yes, electrons are accelerated to collide with a heavy metal target to produce high energy X-rays. a multileaf collimator is used to shape the beam to each patient. There’s a wiki which is much more technical.
This is an animation of what my machine does, even though I do IMRT, not VMAT. It’s close enough to get an idea.
Oh, this is a better video! And thank you very much, Ice Swimmer.
That is not what I expected that machine to do! That’s pretty amazing, really. But yeah that motion would make me feel not-so-great too. It seems to go really fast, though, so there is that.
I don’t blame you one bit for feeling sick of being sick. It reminds me of a silly story, a friend with two young daughters was really having a hard time with them one day… they just got into one mischief after the other. She finally got so exasperated with them that instead of yelling or lecturing etc. she just went upstairs and got in bed. The children were pretty alarmed and worried by that, and crept very quietly up the stairs and to her room. The eldest (who was about 5 at the time) came up beside her and said, “Mom? Are you sick and tired?” (because of course Mom frequently said “I am sick and tired of this trouble from you two!). I can see you being sick and tired of being sick and tired.
Kestrel:
:D Yeah, that’s me all over. I think it’s all cancer patients at least one point in treatment. You just get to feeling there’s no end to pain, there’s no end to feeling like shit, it’s every. damn. day. Days you actually feel okay become rare, and right now, I need more okay days. Of course I’m feeling better today because I could eat and drink. And I want that to continue.
Caine
I’m glad you had a good day. Every ounce of food you can eat is a good thing.
Chigau, thank you.
Oh yes, and I plan to keep on stuffing, as much as I can handle. A lack of food may not be quite as dire as a lack of water, but it has the same effects as dehydration. You get so down, you can’t focus on anything, no energy at all. Even one day of eating has been a remarkable change, and a most welcome one.
I was thinking about you this morning, as I was slathering butter all over my pastry. :)
Everything’s better with butter.
@Caine
With BMI nearing 15 that is a real possibility. That sounds real bad and it will be hard slog to get it back to at least 18.
I wonder how many cancer patients die due to secondary issues like that. I knew one who died of ruptured stomach ulcer, undiagnosed for too long due to painkillers used during the cancer treatment.
Take care.
Charly:
Yes. This has made me determined to quit the trial, I don’t feel there’s an alternative.
I don’t know, but I expect it’s more than I’d be comfortable with; more than anyone would be comfortable with. A lot depends on a person’s oncologist, how diligent they are. I was very lucky in having Reynolds, but he’s retired now. I know he was very alarmed by my weight loss, and he probably would have decided to kick me out of the trial at this point.
Sanford certainly has eaten that whole area. I barely recognized that section of downtown Bismarck, but I’m glad to hear that housing is part of their sprawl. So sorry to hear that you are experiencing inability to eat as a side-effect. That simply won’t work. Hopefully the Oncologist can figure out how to keep the serious side-effects under control without compromising treatment. Hugs to all, and maybe some cake and ice cream?
Thanks, Tethys. I’ve already taken care of everything, spoke to my oncologists and research person, and told them I refuse to take the veliparib. Everyone is okay with that, and I’m feeling fine as long as I don’t take it.
Hugs.
Raucous Indignation, thank you. And thank you for all the email gifties, too. I am so behind, trying to catch up with everything.
Caine,
I don’t know how, but I missed this when it came out. I’m sorry things have been so rough. I hope the new meds will keep you on an even keel.