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.
Hugs.
fuck
fuck cancer
*hugs*
If you cannot tolerate FOLFOX and sundry supportive care meds any longer, there is no shame or harm in telling your team that you are done with that shit and it’s time for them to move you along to RT and capecitabine +/- study drug. You’ve suffered enough. More of the same will only end you up in the Oncology inpatient unit and/or the ICU.
Serious fucking **hugs**, for fuck sake.
Fuck cancer!
A warm and non-itchy blanket!
Fuck cancer. Hugs offered.
My mother just had her first chemo infusion. She has no energy at all and already wasn’t eating too well, and she used to walk everywhere, hike, bike, loved her food. I do not know what to do.
I hope things suck less for you soon.
I remember my father going through something like this in his chemo, and telling me how much one starts to long for relief of pain. Any relief. *sob*
It’s your story and it’s good you are sticking with what you feel. Don’t even worry. No one is expecting you to be all Polly Positive about this. I think cancer just sucks…. it sucks big, green donkey dicks. I don’t think I can put my feelings about it any clearer than that.
Thank you all so much, I don’t know what I’d do without you all. I’ll make it, I just needed to throw myself a pity party.
ledasmom:
Don’t despair, okay? At the very top of the sidebar are all my experiences with cancer so far. The first 5 deal mostly with my colostomy, so unless that’s relevant to your situation, they can be skipped; the others might be helpful to you. Each one has a lot of discussion going on too, which may also help. There are lot of people in these threads who have or are dealing with cancer.
Please, consider Affinity to be a refuge for you, a source of help and support. There’s an open thread here, along with the cancer chronicles, you can talk, scream, cry, whatever you need here, and we will all help you. Treatment is not easy, not for the person going through it, and not for the primary caregiver, either. Your mom sounds a bit like me, and reacts strongly to the cytotoxins. That can definitely be more challenging. What kind of cancer is your mom dealing with, and what is her treatment plan? (Frinst., I have a colorectal tumor, 8 cycles of chemo, then radiation with xeloda, surgery, 4 cycles chemo, surgery.) My 5th cycle is tomorrow.
I think you need to realize you’re in shock, and I know you’re feeling helpless, but you are far from helpless in truth. Right now, you need time to adjust, and time to realize that things have changed, radically. Welcome to Cancerland. Take some time, be good to yourself right now, and don’t hesitate to lean on whoever you have support-wise. And I hope you’ll consider us here at Affinity to be a part of your support network.
Caine, you get all my internet chocolate. All of it.
I’m sorry that you -- or anyone -- ever had to learn what this feels like.
Thanks, CD, and internet chocolate right back atcha -- kidney stones are not fun.
Your noise filters are blown out because you have a shortage of L-glutamine, so your GABA (noise reducing neurotransmitter) levels are down. If you’ve reached the point where 30 grams a day of L-glutamine is barely enough to deal with sores and an irritable GI tract and your brain is mired in fog, it may be time to ask for Ritalin (which is a GABA agonist, plus a nice dopamine lift) or Provigil (which I avoided, because coffee nerves seems to be a side effect). My oncologist (who was under treatment for bone cancer) was so startled by the visible difference that Ritalin made in my affect that he signed himself up for a clinical study on fatigue.
There is no way to explain to someone who has never experienced it what crushing fatigue is like. Everyone wants to pat cancer survivors on the head for our “bravery”, but the truth is that endurance and persistence are the traits that I found most valuable. Also, most people have experienced this flavor of fatigue, because anytime we’re fighting an infection (the flu is a classic example that most people remember), when one’s immune system decides This Is Serious, the cytokines come out. Oh yeah, the cytokines ‘at gits you ef you don’t watch out! (Apologies to James Whitcomb Riley). Imagine what coming down with the flu feels like, when you’re staggering, but your nose isn’t running yet and your throat doesn’t burn yet. Now imagine feeling that way all the time, day after endless day, week after week, with only more of the same ahead of you. It’s unimaginable.
Cytokines are also part of a well known process (with behavioral affects called Sickness Behavior), with over the counter remedies available (anti-inflammatories, antihistamines, decongestants, etc.). The hard part is finding a regime without adverse reactions when mixed with your treatment protocol. The biggest hurdle in the US is that opioid manufacturers have convinced clinical caregivers that many NSAIDs will kill your kidneys! You’ll put your kidneys out, kid! And yet, in the EU, they use these NSAIDs without a mass epidemic of kidney failure. You know what else they don’t have in the EU? A massive opioid epidemic. IKR?
The bottom line is that you’ll probably have to fight for any NSAID (outside of Tylenol, which actually does kill your liver). Fortunately, the only benefit of being a foggy-brained, socially awkward, almost-zombie is that we have zero fucks to give. So just apologize in advance (even when you don’t actually care) and let loose the profanity when you get the kidney lecture. Because it won’t matter if you’re a respected immunologist with a pile of patents under your belt, you’re just a patient when you’re under care, and those NEJM papers you downloaded are probably fake news off the interwebz. I’d like to think that cancer care has progressed in the ten years since I was treated, but that’s not what I’m seeing.
I offer non-painful internet hugs.
I cannot imagine what it must be like to be hyper sensitive and deadly tired at the same time. We’re here.
Thanks, Giliell.
Not at all fun when you’re trying to sleep. Almont is kind of like a whisper gallery, the smallest sounds can be heard for miles, and rural life can be seriously noisy at times. I can’t believe I’m missing crickets.
minxatlarge:
It has, and my medical people are taking good care of me. I do not have standard or reliable reactions to most drugs, which makes things more difficult for everyone.
Ah-hemm …
Caine, thank you so much. She has pancreatic cancer, maybe spread, maybe not, on -- I’ll have to look it up, it just fled my brain. Abraxane and gemcitibine. I am not really her primary caregiver -- I live a thousand miles from her, I’m here for an unspecified length of time because she can’t live by herself right now. My brother and sister-in-law are doing a lot of the heavy lifting. She has always been very active and being unable to take care of herself hurts her, you know?
Raucous Indignation:
Yes? You’re gonna have to go blunt here, I’m not exactly sharp these days. And it should be remembered that all this happened after last cycle and the neulasta. My med people are not aware of any of this shit, they’ll find out about it tomorrow, and I’ll find out what changes or doesn’t. So please, no assumptions about the level of care. I am still capable of assessing that much.
You get my internet chocholate too, and hugs, and soft fluffy clothes and soft fluffy blankets.
Would ear plugs help at all? In getting to sleep, so you didn’t hear the little noises. You can get ones with different levels of protection, personally I wouldn’t want to cancel out all sound as that would make me feel vlunerable, but cancelling out some can be helpful.
Oh and fuck cancer.
ledasmom:
Oh, that’s rough. Yeah, this is not going to be an easy time at all. There’s info about abraxane here, and gemcitibine here. I find it helpful to know about the agents being used, and reading up on these, it’s not surprising she’s not eating a lot. I’m seriously underweight, and it’s often difficult for me to eat as much as I should. Try small things throughout the day. If she can’t get a couple of ounces of something down, go for 3 tablespoons of whatever. Sometimes the fatigue is so overwhelming, you just don’t feel like you have the energy to eat, but if you start, you often find your appetite speaking up. When it’s really difficult for me, a small dish of peaches or something like chocolate Malt O’ Meal will go down easily. Ice cream seems to be something of a universal where chemo is concerned; for many people it’s very comforting, and easy to eat. It’s also soothing if you have mouth sores.
Oh yes, I know. I know all too well. Learning to accept help can be a hard obstacle to get past. It is one way to reason things out though: “the more you eat, the more you’ll be able to do this, that, and the other thing on your own.” That might not work, it might end in world class stubbornness, but it might be worth a shot. You all have to learn together, and find those things which work and which things don’t.
If there is ever any way I can help at all, please don’t hesitate to get in touch, okay? My email is on the sidebar.
Jazzlet:
*shudders* No, I don’t like things in my ears. I do sleep with headphones on sometimes, but I don’t have a pair rat-proofed at the moment. (They love speaker wire, chew right through it.) I play two thunderstorms at night, one on my tablet, and one on Athena, my computer. That cancels out a lot, but some noises make it through.
Sounds like some rat-proofed headphones would be good and a rat-proof place for them to live when not in use. Forgive me for suggesting this, but it would be something practical Rick could do, when there is so much he can’t do to make things better. I make this sugestion because it’s exactly the kind of thing you can’t get round to when you are exhausted, not because I think you are not capable of doing it when you are your normal self. And you are of course free to tell me to piss right off, because I know I’m doing that irritating ‘have you thought of … ?’ thing. Sorry.
Caine,
Please don’t feel guilty about that! I’m sure you’re not hurting people as much as it may appear to you and it’s not something you can control at this point, so don’t give yourself a hard time over it. I’ve been having trouble with that myself, especially giving harsh answers to people when I’m asked something trivial, only to later realize I was kind of an asshole and they did nothing to deserve that kind of aggressiveness. And I am only dealing with extreme exhaustion and some sleep deprivation, I can’t imagine adding intense pain and cytotoxins into the mix.
*hugs* and may the warm sunny days come and help your mental state.
***
ledasmom
I know. When the feelings of despair, disorientation and helplessness all come crashing at once it is difficult to know what to do. My mother was diagnosed with lung cancer (that has spread to the bones) almost two years ago and I still mostly don’t know what to do. When she got the diagnosis I frankly thought I was going to lose her within months, because the moment you hear “stage 4, bones” it is hard to find any hope. But treatments for her type of cancer have improved a lot, she’s still here, still fighting, has regained some quality of life (or did… the last two months weren’t so good, the cancer seems to be progressing again). Wish I could give you some helpful advice but it is difficult, every situation is different. I remember a lot of people told us at the time to find ways to laugh together, but in her case that was not helpful advice at all, laughing just made her cough worse and reminded us the hard way of what was going on in her lungs. I guess just take care of yourselves and keep your minds distracted with stuff, whatever that stuff may be. *hugs* and best luck for you and your mother.
Jazzlet:
It’s a fine suggestion, and I don’t mind that at all. I would just have to locate the headphones first, fuck if I know where they are. :D
Nightjar:
Thank you so much. I’ve been dismissing those thoughts as much as I can, because I just end up obsessing over them, which leads me in a downward spiral, and I don’t need that. I just need to keep my mouth shut more often. :laughs:
It just dawned on me that I got my words back. The first, worst chemo brain thing was losing commonly used words. Now they’re back, it’s just sounds which have gone awry. Maybe this won’t last very long.
Caine,
That’s good to hear! I was wondering, do you have any idea if the Neulasta side-effects are the same for every infusion or if it is just the first that is much worse? I’m asking because with zoledronic acid the first infusion was nasty as hell but the subsequent ones were not nearly as bad. But it’s a totally different kind of thing, so I don’t know.
Also hugs from a longtime reader, rare commenter.
Nightjar:
None whatsoever. There’s only one way to find out, but yeah, I’ve been hoping this was an initial response sort of thing. I don’t know what will happen tomorrow. If it worked, and my white count is up, then I might be able to skip it this cycle, and do it again two weeks on. I’d be happy to skip it, but if I have to do it again this week, I will, and just hope I’ll have a better reaction to it.
Mynax:
Thank you very much, for the hugs and the reading.
Caine, I do not know if this helps, but your posts help me. Both the cancer ones and the not-cancer ones. There is always something there that engages my brain.
Chemo brain + pain brain is a terrible place to be. I hope tomorrow your team can find a way to improve your quality of life, especially the pain out of control. And I’m sorry that you’ve been having a difficult time talking to people. I think most people don’t understand just how much energy it takes to be social or how totally depleted a person can get.
ledasmom @ 29, yes, it helps. Thank you so much. And I hope you can at least get a bit of what you need here. :)
Voyager @ 30:
That’s the truth, and I’m not overly social to begin with.
I want to offer you elusive webhugs and internetchocolate as well, if you want them.
Had my screening the end of last week. Nothing inside me but I will have to get some patches of skin removed, the doc found concerning. Thank you for metaphoricaly kicking my butt into action, Caine!
Fuck cancer!
Brave news, Avalus! I’m so glad you had such a good result.
I always thought it was so stupid in movies when someone is poisoned and they just cough a few times and keel over. Most poisoning feels like what you’re enduring -- because that’s what it is. It’s just (hopefully) fairly specific and well-targeted poison.
Wishing you well,
mjr.
Thanks, Marcus. I might be ready to join the land of the living today. In movies, the intent behind poisoning is to kill. I’m being almost killed, it’s different. Anyroad, not all movies. DOA (the original, I never saw the remake) has the victim fatally poisoned, but not for 24 hours. He’s not feeling too well the whole movie.
More hugs. Ugh, so sorry you too experience unusal side-effects from medications. I deal better with distress if I expect it, not so much if it is a surprising and bizarre reaction like you describe.
Hopefully there is something they can give you to get your nervous system to relax? I have cervical nerve damage that makes my left shoulder pretty much a permanent charly horse. I was given some Tadin, seven flowers tea as a gift this X-mas. I did not consider it more than a new tea, so I was surprised when it actually did relax me so much that I had to lie down in mid-afternoon and slept for about 14 hours. I’ve had the same tea from other brands do nothing, and rarely sleep more than 6 hours a night, so maybe it would help with the tension? It is available at Walmart and Target.