#i do eat healthily bit fuck you if i have to put up with chronic pain i should at least be entitled to eating food i like

[whydidoth]

.

#super cool for my legs to just stop working so i get to be in a ton of pain and nauseous and can also barely even move #and i missed class yesterday because i could literally barely move my legs without crippling pain #but i was at least functional enough today to go even though whats normally a fifteen minute walk across campus became a forty minute walk #and also probably undid whatever healing my rest day did so now im stuck in bed again #and i got to find out that the building my class is in is wildly inaccessible #the only elevator is literally in a different building and there's a slope that is definitely too steep to be ada compliant #and also the elevator is behind a door in a dinky corridor and the door its behind doesnt have a fucking button for it to open itself #and all this time im just thinking about how ive been told i shouldnt use a mobility aid because itll lead to my muscles degrading #like idk man!! #but i think maybe being able to use my legs at all even if theyre. #a bit weaker is probably preferable to not being able to move at all!!! #and i cant even get into see a doctor about any of this until october despite scheduling the appointment way back in fucking APRIL #because we live in an absolute nightmare of a healthcare system #and if i get told by one more medical professional that i should stretch and workout more i think im not legally liable for ripping #their fucking heads off #newsflash!!! i do already workout on the days i can move my legs!!!!! #and shockingly #it isnt a common symptom of not working out to get crippling leg pain or else wed probably have a lot more people needing wheelchairs #or getting told to eat healthier #i do eat healthily bit fuck you if i have to put up with chronic pain i should at least be entitled to eating food i like #oh maybe if you only eat uncooked broccoli and work out twenty three hours a day you might have the privelege of maybe improving your legs #obviously since i didnt have the good sense to be born able bodied

[fatghostboi]

Day 1: uhh so my scales are fucked I think but cw: 143.4 (I think it's mainly water weight lmao) and I wanna be 100lbs maybe 90lbs

Day 2: 5'3, I would wanna be a bit taller maybe at least 5'5 or 5'6 hhh

Day 3:

I want their legs. My legs have always been so big and I'm jealous. I don't want my legs to look femme fuck.

Day 4: the clothes I do like on me won't fit, or I'll have more curves. I know ill look more curvy, but I can hide that more I think. Or I'll just gain it all again fuck

Day 5: I want to lose weight to be good enough, for people to look at me and think I finally look good or even that maybe I did have a problem when they all turned me down. To look masculine enough and to have masculine features. To finally be good looking rather than the fat trans friend who looks too femme because of their fucking baby face with chub.

Day 6: I do and it's usually because I'm in a destructive headspace. I try not to often but yeah I do.

Day 7: no they don't. Mums never noticed, and the one time she did she took me to the doctors for depression thinking nothing of the food, then goes ahead and tells me I'm not depressed that I just get down sometimes when all the signs are there lmao.

Day 8: walk. My disabled ass cannot really work out and really shouldn't walk as much as i do when I do but my Ed can't help it, I love seeing the numbers on my watch go up and up.

Day 9: yes all the time. As a kid I was obese and overweight and I used to get called so many things. One thing that stuck with me was obese monkey. Good Times. Oh and the fact my ex said I run over my dog with my tree trunk legs... Ya know a few days after my dog just got killed but sure.

Day 10: probably my social life. I've lost my social life due to physical and mental illness. Everyone wants to go out and eat and I just don't want to. But also cooking. I miss cooking good meals rather than looking at meals as just calories I shouldn't consume.

Day 11: I don't have a favourite oops they're more on Instagram

Day 12: egg, egg whites, rice, toast, wheetabix, porridge, veggie sausages, chicken nuggets sometimes, a shit ton of veg like the amount of brocoli I consume lmao. Snacks wise sometimes the odd biscuit, usually carrots, houmous or just nothing.

Day 13: mainly unhealthy but sometimed I try to do it healthily and get no results so I get pissed.

Day 14: 100-90 lbs and I honestly don't know. I've failed so far but I fucking want to so bad. My first big goal is getting down to 120lbs so

Day 15: I'm not but I try to be. I would definitely consider being vegetarian as going vegan would probably affect my chronic illness worse due to the lack of vitamins I would get. I'm very picky with food but I do love to eat vegan food when i can.

Day 16: I was about like 10 lmao

Day 17: I mean not diagnosed but probably lmao

Day 18: chocolate and noodles. I can't help myself i still eat them. The noodles I have are 269 cals per a packet and that's why I eat those ones gah

Day 19: about an hour ago? I had 2 biscuits with my coffee so I didn't binge today lmao

Day 20: AIT starts off easy, gets harder down the line. Never completed the whole thing but I have lost loads of weight from it before. Except this time? Idk like my body shows I have but scales say nah

Day 21: ew. So naturally I have very big hips, that's not fat that's bone sadly, so in men's jeans I'm a 30waist in females I'm a size 10. Mens tops I'm a M if I want it baggy or it's a tight fit cause S makes me feel gross in tight fit. But if I want it to look decent I'm a S and I would fit into an XS if my shoulders weren't so broad but I'm not complaining on that lmao

Day 22: 122lbs. I gained this time around because of the medication I was put on, I really want to be off it because I also don't wanna get pregnant. But it's also causing issues so I may be put on a different one soon I hope

Day 23: yes and no. All the trans guys that pass are usually very skinny so I thought I need to be to pass

Day 24: ugh. I can understand if someone is pro Ana to themseleves because uh that's an eating disorder lmao, but if you want to encourage others to starve themselves and be unhealthy? You're fucked up.

Day 25: I have a lot. I can't remember my first experience because it was so long ago but I have the odd memories of purging in fast food places after I was taken out to eat.

Day 26: being good enough and passing

Day 27: I'm okay being around it cause I usually have good self control, I like baking a lot too, and I'll usually eat one or two then leave it.

28: yess. So hoodies will look great on me

29: everything's beautiful on everyone else except for on me so.

30: I'm 17, trans, and a wreck. Also my stats are the same cause I did this in one day lmao

[braindamageforbeginners]

more FAQ

Cycle 10, Day 13

So, I spent this morning hanging out writer-y people and I was asked such a good question, I thought I’d use it as another FAQ. As always, I can only answer for myself on these things, ask a physician or real grown-up if you have any doubts. And to all my friends and family who think I’d use a blog to update my health status if things go bad - that’s what Instagram is for, people.

Q: What will my cancer treatment be like?

A; Exceptionally and amazingly unpleasant, I should imagine. Even though I don’t really like the whole “warfare/warrior” metaphor, there is one useful thing about it. I’ve heard from enough combat veterans - in various ways and media that, no matter how well it’s described, surviving modern warfare is indescribable to anyone who doesn’t have prior experience. Same goes here - until you survive a terminal illness, or get that fatal phone call, you really don’t know what it’ll be like, no matter how good I am at describing it. All I can tell you with any certainty is that you will have to develop a completely unassailable faith that you will outlast this thing. From that, you can get start developing the sort of pig-headed stubbornness you’re going to need to win this thing and carve out some sort of normal life. Having said that, I’d also say that you might have to modify your life and life goals, like Data in the game Strategema, in the immortal Trek episode “Peak Performance,” when he (Data) successfully challenges the annoying bureaucrat/ambassador caricature to a rematch: “ I was playing for a standoff, a draw. While Kolrami was dedicated to winning, I was able to pass up obvious avenues of advancement, then settle for a balance. Theoretically, I should be able to challenge him indefinitely. ” It sucks that you might have to put your life on hold in a potentially-never-ending stand-off with a disease, And I’m not going to argue that life is worth living - that’s your decision, and there are potential long-term constraints to my survival that I wouldn’t consider acceptable, but you might. Also, keep in mind, that same episode has the line, “ It is possible to commit no mistakes and still lose. That is not a weakness. That is life. “ These are dangerous diseases - deadly if mistreated or mishandled, and frequently deadly even with the bestest care. You’re going to have to see those sort of statistics like “90% fatality rate” and say, “Fuck that, I’ll take those odds, someone hold my seat while I get a drink.” Of course, it’s easy to say that now. However, more to the point of the question, I’ve had a multicourse treatment starting with neurosurgery, then radiation and chemo, and maintenance chemo. After each step, you’re likely to get a week or two off to recover before your doctors review the results, and clear you for the next step. Treasure those weeks off, they might be your only progression-free moments where it looks like you’re on the upswing. And remember, the phrase, “I would recommend more treatment” is a good thing. Cancer patients only get sent three places: home, the hospital, or the hospice. More treatment and hospitals are bad, expensive, and dangerous, but they beat the hell out of 33% of the options.In my case - in the case of most chronic cancer patients - I’m not wild about five years of chemo, but it does beat the alternatives. When our post-Mastodon species talks about “killer instinct,” it’s usually in some unhelpful motivational seminar. No one talks about it for what it really is - coldly, and grimly doing whatever is necessary to outlast your enemy, which, in this case, is a rogue bit of you. Nietzsche talked about “will to power,” and it’s been used in conjunction with some horrific rhetoric and movements, but I’d advise you to embrace it if it’s the only way to get home again.  However, my treatment has been: 1. Neurosurgery 2. 4 weeks off 3. Initial chemoradiation for 6 weeks (that’s brutal) 4, a few weeks off 5. maintenance chemo consisting of 5 days of Temodar and three marizomib infusions 6, ?

Q: Do you ready things about your disease differently than you do other biomedical studies and/or literature?

A. Oh, fuck, yes. I once read that the tell-tale sign of privilege is ignorance (about their privilege and those in a harder circumstances)(which, as someone who’s had a few of those permanently revoked - there was a time when the words “third floor” didn’t have me looking for an elevator)(still, a limp and/or ankle braces definitely beats that horrifying walker). In the same way, an ability to classify knowledge as “academic” is a sign of intellectual privilege (or complacence, which is the next step of privilege). I am absurdly invested in anything I read about GBM. Or cancer. Like, I understand - and kind of agree with - the old rule about not allowing physicians to treat their family members. You’re not going to exhibit the same degree of clarity and judgment. Same thing for me - I’m nigh-immortal on my good days (or with a morale boost), and, potentially dead on the bad ones. It’s exhausing, but, at the same time, i don’t know why we exhibit such disinterest in other areas (Ladies, I’m still single). You are either 1000% focused and committed, or not a all. You know what doctors call cancer patients who successfully complete half of their required treatment before giving up? “Dead.” There’s a good chance you’ll die, anyway, not committing to a treatment course once you’ve started is just a very expensive form of lengthy suicide. Additionally, even though I still use clinicaltrials.org and PubMed as my primary-source services on such things, I’m not as interested as I used to be. Don’t get me wrong, I am still absolutely interested in any new developments in my disease or treatment plan - I literally spent a few hours every week on those sites, but, in August, after John McCain died - from the same disease - and GBM treatment studies went from a few dozen on the FDA page to hundreds - I really started to believe - still do - that If I can just live long enough, healthily enough, science will catch up with me.

Additionally, there aren’t many cases of brain cancer of any sort, so you have to take a less methodical, statistical approach, and start looking at the outliers. I call this the Jack Lallane vs biochemistry approach. Stick with me. So, many years ago, a biochem professor in grad school pointed out that, according to the studies, there was no benefit to the sort of excessive protein consumption promoted by body builders, athletes, and other healthy-looking people. I probably should have realized this was coming from a 5′ middle-aged British man who looked the part, and taken it with a grain of salt. At a friend’s encouragement, I did start taking the supplements and what-not, and, as it turns out, further investigation and research showed that protein doesn’t promote muscle growth, unless it’s consumed within an hour of the workout. This is one of those cases where having incomplete information - as my professor did, as eventual research showed - is actually worse than ignorance. To that end, even though I try to keep current on research and development on GBM, I’m less interested in conventional wisdom and studies, and more on what the statistical outliers suggest. This is not to suggest for a minute that you will be better-informed than researchers - again, when the Warlocks or Mad Scientist say “No,” I usually take them at their word. But GBM research is a very weird and strange area of cancer research (again, it was nigh-impossible to find physicians who would agree to treat the disease as aggressively as they could; so we’re talking about a cancer that’s only been formally studied by epidiomology and science for 20-odd years), so I’ve gone with trying to track down data on those few outliers who outlived the 14-24 month life expectancy (also, good news, a recent study showed that almost 30% of us live for at least two years post-diagnosis), and figuring out how they did it. So far - and this is useful - the major commonalities are that they did successfully get a medical team to take them seriously, treat them aggressively, and they survived the treatment, which is still almost as-likely to kill you as the disease. They all also stressed the importance of “complementary medicine” in addition to the real stuff. So, again, full disclosure, I am not a fan of “alternative medicine,” which is when you get the unproven or unstudied stuff instead of traditional Western Medicine, but I am a massive fan of “complementary medicine” which is when you use the freaky stuff in addition to the established, standard stuff (and a crazy hallucinogenic, experimental chemo trial would qualify, I think). “Eating healthy” and “staying psychotically active” are also included in that category. We can talk about fad diets and nutrition, but, again, just going old-school Jack Lallane, I try to get 7-10 servings of raw fruits and vegetables (I really don’t think the “raw” part is very important, but it would take time and energy to cook them, and I’d rather that go into writing or research)(which reminds me, I have to look into photo enhancement/editing techniques this week). “Coffee” is also not on anyone’s nutritionally-recommended list, which makes me ponder how those researchers survived their patients. And such things aren’t studied by most researchers; I don’t think that’s because there’s any insidious pharmacy conspiracy, I just think it’s hard to find qualified patients (again, the rules governing these things are usually established by human rights laws and treaties, add the various dos and don’ts of a clinical trial selection into you reach anothe order of magnitude for cost and lack of returns), and, in many cases, there’s no need to reinvent the wheel. With one notable exception. In addition to being a massive fan of fitness and nutrition as a way to keep healthy and vital enough to convince your physicians to douse you in Agent Orange, I’ve also become a major proponent of medical marijuana. Again, not because it’ll cure cancer, but because it’s better at treating some of the nastier side-effects than established pharmaceuticals (and it’s telling that the shift comes just as a lot of lawmakers and pharmaceutical giants start divesting themselves of standard stuff and invest in medical marijuana development and research). And what I didn’t know at the beginning, that I wished I did now, is that the side-effects and problem stack up in standard chemoradiation. It was harder to drag myself to the infusion center on Cycle 9 than Cycle 5. But I was there.