Tuesday, December 30, 2008
Had a pretty good day, today. My brain's working again, and all that. Also got my Ashley Wood book (Complete Popbot) in the mail. Very happy. Also got approved for the Trillium drug program. That means my drugs are now covered. Wheeeeee!
That's all I got. Fuzzy scalp.
Today finally felt like a really real normal day, at last. I think my brain is finally back 100%. In celebration of my returned sense of taste, and general gluttony, today I had a cinnabon for the first time in at least two years, if not more. Mm mm yum. I have much more of a tolerance to sweet tastes, of late, so that was pretty awesome. Cue me bitching about getting fat again, tomorrow.
The numbness in my left hand is still there, but it feels like it's slowly going away. I say that, because I'm starting to feel some pain in my index finger, but that may also be because I've been tenderizing it for the last few days, trying to feel something there. The itching is worse than ever. Stupid toxins, etc.
But hey... No more night sweats for quite a while. I can't describe how glad I am to be rid of that symptom.
I guess the most perplexing thing about my experience with cancer is how earth-shattering, yet how mundane it is. It affects every aspect of life, but at the same time, life still remains fairly normal. It's all symptom management, really.
I've never really considered myself "lucky", especially when you throw in, you know, the cancer, etc., but as far as this is concerned, I'm having an easy go of things. Here's hoping it lasts.
Monday, December 29, 2008
I'm kinda all over the place, lately. Very moody. Not a happy chappy. I don't know how much of that is because of physiological factors, and how much of it is purely psychological. Fun fun.
I want to read more. I have a stack of books friends have lent me, that I've yet to plow through. I also traded in a lot of old textbooks at the K-W Bookstore downtown today, and have quite the sizable store credit. I'd like to load up on photo/art books, however. I picked up a small Ashley Wood art book that was on sale, the other day, and I ordered the "Complete Popbot" book online, at last. God Bless his smutty, robot and zombie-ridden soul.
On a final note, and this will likely be a recurring theme... I wonder why people are so afraid of confronting negative attitudes and feelings. I know there is a hefty body of research that shows the links between affect and illness perceptions, and prognosis. However, there is research to document the fact that unrealistic expectations, and unwarranted optimism ("objective optimism", I believe they called it) are damaging as well.
Too tired for a rant. It's way past my bed time.
Sunday, December 28, 2008
A friend was asking much the same, in regards to impending chemotherapy. I wish I fucking knew.
I was sort of touching on the subject earlier on. If someone could give me an answer, *any* logical answer, I'd be glad. I joked earlier tonight about confronting the "spiritual counsellor" at the hospital about it. Asking him how a benevolent, all-seeing, all-knowing, omnipresent and omnipotent god can allow things like these to happen. I guess even if someone told me that it was "survival of the fittest", I'd be satisfied. If someone told me that I'm genetically programmed to die young so as to leave room for better, fitter individuals, I'd accept that. But this is random. In the words of Gwen Stefani: this shit is bananas.
I just want a logical answer. I need something tangible. Oh well, one mini breakdown per month is not too bad, I guess.
Saturday, December 27, 2008
Here's a quick run-down of this chemo experience:
- No nausea
- Little dizziness
- Much motion sickness
- Some drowziness
- Loss of feeling in left-hand index finger and thumb (eep.)
That's about it for chemo-related symptoms.
The cancer itch is still here. I scratched my ankle too hard the other night and broke the skin. That's no good.
Also, all that bacon I was eating last week is catching up with me. Hoo boy. Right to the thighs.
Actually, I was going to leave it at that, but wait, there's more! I weighed myself yesterday, and I was roughly 175lbs. (okay, 180, but I was wearing my boots and my big-ass leather coat). That puts me at 10 pounds heavier than when I started chemotherapy. I guess that's good. However, body image is not doing so well. I'm glad I don't look quite as emaciated anymore, but between feeling sluggish and useless, the stupid new haircut, and the weight-gain, I'm kinda really really looking forward to the spring and health and a gym membership.
Thursday, December 25, 2008
This round of chemo's going okay, I guess. Still feel like my knees are getting kicked out from under me, and I've got butterflies in my stomach constantly, but it could be worse. I'm at least semi-useful. Ish. Kinda.
I'm feeling extremely nostalgic lately.
That is all.
Wednesday, December 24, 2008
I woke up at 8:30, and felt fine. I'm still feeling alright, but I just took the Kytril. I wonder how I'll be in a little while.
Chemo sucked especially hard yesterday, as I hadn't slept the night before, so I was exhausted, and kept falling asleep. That wasn't so bad, but I was having some pretty wild hypnagogic twitches, and well, to put it bluntly, I kept sliding down the propped-up bed, while my pants did not. Chemo hurt my balls!
Well, that, and the fact that my veins started BURNING. Hoooo, port-a-cath, I can't wait for youuuuu...
I rented Rock Band 2 the other day, and picked up a microphone. I figure I can't really run or bike*, but I need to do SOMETHING. I haven't sang since High School, and even then I was quite awful at it. Now's my chance to learn this relatively useless skill. But, in typical me fashion, I kinda overdid it yesterday. Since I couldn't sleep, I was up from the time I gave up sleeping (2:30) until I had to go to leave for the hospital (7:30), singing. After my chemo nap and all, I went back to the singing for some six more hours. It may sound like a waste of time, but if anyone needs to hear a stunning rendition of Duran Duran's "Hungry Like The Wolf", I'm your man.
* My sister has an exercise bike in her basement. Hmmm... I hate stationary bikes, but that might just work.
Tuesday, December 23, 2008
Chemo in less than six hours. In some ways, I can't wait. My neck hurts, I'm anxious and fatigued, and I'm about to tear my skin off, I'm that itchy. I've bitched about the stats before. In the United States, there's some 1000-1200 people diagnosed with Hodgkin's every year. Given that treatment is roughly six months, at any time, there'd be only half as many patients. But for use of easy numbers, let's say there's 1000 people with it. Canada's population is 1/10 that of the United States, so let's assume there's 100 people in Canada with Hodgkin's, then. Only about a quarter of these people have the wonderful symptom of pruritus. That would mean that in all of Canada, there's maybe 25 other motherfuckers as miserable as I am right about now.
Seriously, fuck cancer. Twenty-five people? That's not even a school bus. That's a SHORT bus. That's an honours seminar.
That's fucked up.
I'm not going to start being all "woe, woe is me", but I can't help but feel as though I got really, really fucked over.
Once I kick this, I'm fucking buying a boat and living off-shore, L. Ron Hubbard-like. Minus the Xenu, though.
Maybe I'll look into Sealand. I'm not going to be the same coming out of this, and I think it'll only hurt me in the long run, if I try to ignore that. I'm going to need to make some radical changes, but I don't know which way to go. Some people, when they get sick, they become kinder. I can tell you that that's not the case. I've just realised how precious little time I have, and how limited my resources are. I'll just choose to allocate them more appropriately, towards the people I love, and to hell with everyone else. Some people find religion when they get sick. Some people find comfort in faith. Let's say that my feelings towards the all-powerful healers are less than positive, right now.
Fuck cancer. Fuck it so very, very hard.
Monday, December 22, 2008
Getting used to the short short hair. Ah well. It's only transient, as well. To those who don't know me personally, I'd like to point out that roughly this time last year, my hair was down to my chin, or at the very least my mouth. Then I cut it short because it was starting to fall out... Then I cut it short because it's going to fall right the fuck out altogether.
Good things have come of this. I have good friends. I've made new friends. I've befriended this truly awesome lady who's blogging much in the same way I am, about her experience with cancer. She's shown more courage in her openness than I think I will ever be able to muster.
She also said she likes my twisted sense of humor. Deborah, this is for you. Why did the cancer cell cross the road? To avoid apoptosis. *cough*
There are good things to talk about. However, I'm nowhere near the proper emotional space to talk about them now.
Saturday, December 20, 2008
Kinda okay with it. A bit disappointed to find out that I have a relatively even skull, and have no 666 tattoos or anything of the sort. No horns, no nothing. What a rip-off.
Also, this. Ladies (and gents), steady yourselves.
Friday, December 19, 2008
Hair is probably going away tomorrow. I'm not going to wait around to have it come out in swaths. It'll do that anyway, but at least it won't be as dramatic. Either way, it was getting long for my newfound liking...
Thursday, December 18, 2008
Had sushi today. That was pretty awesome.
Drew a robot today. That was pretty awesome too.
Wednesday, December 17, 2008
Tuesday, December 16, 2008
Felt like cookin', so I cooked. Dirty, dirty, tasty recipes are up for grabs, people. That was pretty much most of my day. Got an awesome dress shirt. It's got epaulets. I know the sizing is screwed up for it, but it's a "small." I've never purchased a "small" anything in my entire life. Cripes, my silhouette screams "Treblinka".
Energy was good, yatta yatta. Was. Bed time.
Monday, December 15, 2008
That's all. Bed now.
Sunday, December 14, 2008
Yesterday I decided to venture in the scary outdoors for the first time since Tuesday. SARS mask in tow, Melissa and I went to the Stitch N Kitsch show uptown. I stopped to chat with one of the vendors, who asked about my mask. She said that one of her children, I believe, had a depressed immune system, and was used to the hypervigilant lifestyle. I mentioned I was undergoing chemotherapy, and she pointed out that one of the adjacent sellers had just finished chemotherapy herself. We chatted for a while longer, and I moved on to the next table, and the next, etc.
A few minutes later, one of the sellers -- the one who had recently finished chemotherapy -- came up to me and gave me one of the hand-made pillows she was selling at the show as sort of a "healing aid". I don't know exactly what did it, something between my drug-addled brain and her absolutely surprising display of generosity rendered me rather... stupid... and I am kicking myself like all fire for not getting her contact information, so I could properly thank her. She told me she had just finished her second battle against breast cancer, this time having undergone chemotherapy and surgery. We talked a bit about drug-induced states and the such, and I can only hope I didn't come across as a total space cadet, etc.
All in all, I was very touched and surprised, and am extremely grateful. Also, this pillow, made with vintage Japanese printed cotton, is really awesome.
Saturday, December 13, 2008
I'm still not 100%. Reading is still difficult. Poor sentence structure is my enemy. I can manage short online conversations and the like, but I still can't read a full article, or anything of the sort.
The ciprofloxacin (antibiotic) is messing with my stomach something awful. I had some pretty bad pains last night, but I can't mix it with any antacids or anything of the sort. I'll try going back to good ol prevacid tonight, an hour or two before I take my second round.
Food is starting to taste normal-ish again, but I still have no appetite. I somehow managed to thankfully put on a few pounds before I started chemo, but I've lost roughly 7 pounds since then, if my bathroom scale is to be believed. As long as I don't start looking like Perry fuckin' Farrell, all's good. That little gnome freaks me out.
Friday, December 12, 2008
In other, non Timothy Leary news, lookit my neck! LOOKIT! The swelling's gone down a whole lot. Still no clavicles in sight, but you'll have to take my word for it. No topless pics for you. Yet.
My head looks HUGE!
Thursday, December 11, 2008
This may be wishful thinking, but I think the swelling in my neck has already visibly gone down, and I already have some improved mobility. It doesn't do me much good, 'cause all I do is lay on the couch, drool, and pray for death, half the time, but I'm that much closer to doing a Linda Blair a la Exorcist impression.
I wanted to go into work today, at least for a change of scenery, but I feel all wobbly still. As long as today is better than yesterday, I can do this. But if I have to go through another day like that, I don't know how I'm going to do this. My brain is still foggy... I can't remember what the hell I wanted to say... Here's a piece of advice to you all: Don't get cancer! It sucks!
Anyway, I never talked about how chemotherapy played out. Well, here's the basics:
You come in, and have your choice of either a chair or a bed. I chose a chair. First they heat your arm up in a warm blanket to make the veins more accessible, and they start you off with a saline solution (that is, once they find a vein. Ouch.) Following that, you get a bottle's worth of Benadryl. Then you nap for a bit. It's kinda nice. Then more saline, and then they start pushing the drugs with a syringe over a short period. Now you get to make awkward conversation with the nurse about how your pee will turn red, and perhaps some of the work you do. Then they stick you with another IV bag that goes along with an equally-sized saline bag, and let you stew there for another hour or so. And then you're off home, waiting for the shit-kicking to begin. For me, it didn't take too long. I was out of the hospital by about noon, but started feeling like shit by about 4. Took a nap, and I've been in a haze since. Every morning starts with Kytril and an antibiotic, then an hour later I try to eat and take my allopurinol. Eleven hours later comes round two of antibiotics. Usually around this time I take the other nausea med (the name escapes me), because I start feeling like crap. Shortly after, I'm back in bed for 15 hours. It's really not so bad, if you hate life.
Tune in next time for an in-depth description of lymph node biopsies, bone marrow biopsies, and gallium scans. Oh my!
Wednesday, December 10, 2008
I should mention that I have not thrown up once, from this. However, I've been feeling like I am absolutely stone drunk, minus the mental fogginess. Extreme fatigue, exhaustion, and a cold feeling in the stomach... though the last one could be from all the water I'm drinking...
I had a point to this, but I've got the "chemo brain". I can't think at all.
I'm trying to not sleep too much, but sometimes it feels like that's all I can do to stay... alive... ish... Blech, I hope I feel better tomorrow.
Only eleven more rounds, right?
Tuesday, December 9, 2008
Started ye olde chemo today. So far so good. No real nausea or anything of the sort. Some massive fatigue, but that may have been last night's sleep, or stress, as well. Took a nap (hence the bedhead), and I think I'm fine.
Chemo got off to a bad start, but that's just how things go. The nurse accidentally went right through my vein (ouch #1), and hit a nerve in my wrist (ouch #2)... But it was smooth sailing from there on, I suppose.
I'm really considering a port-a-cath right now. It's a subdermal implant in the chest that gives them a line right into a main artery, and it minimizes the risk of vein damage. However, it also raises the risk of infection, as it is minor surgery. But I'd get to feel like an awesome cyborg, 'cause I'd have a "port".
Three last things of note. 1. Cancer patients are fucking annoying. Always living under the strange delusion that everyone wants to hear about their illness. (Haha, oh, the irony). 2. I'm having a very tough time with people. I'm getting the sense that I'm being seen as "damaged goods" or at the very least unable to take care of myself. 3. The african place downtown is officially on notice. I've tried to get food from them twice in the last week or so, and though they claim to be open, their doors show otherwise, and they have no hours posted!
Ooh, I think something's a-brewin'. Nausea med time, methinks.
Monday, December 8, 2008
Hospital fun today. Got my first round of meds before chemo, and they came up to something around 200. I'm applying for the Trillium Drug Plan, because $200x12treatments=$2,400. Oh, life, you so funny.
I'm glad, because I don't really have to worry about the financial aspect of things, even if I can't get the drug plan, what with my parents and all, but fuck. As though this couldn't be more of a burden.
One of the meds (allpurinol, I believe it's called) is essentially gout medication. Do I have gout? No. Will I develop gout? Likely! You see, when lymph nodes shrink as a result of chemotherapy, they release a lot of uric acid. Excess uric acid leads to gout, and gout leads to pain. So much for ambition...
Finally, my doctor also prescribed a 10-day course of antibiotics, as I think I'm developing a cough.
To quote the dude from Superbad: "Fuck my life."
Now if you'll excuse me, I'm off for my last supper.
Sunday, December 7, 2008
More coedine... More wooziness. I don't like it, but at least I'm kinda mobile. I've been working on a work project for... a really long time, now. Every time I think I've got it, I lose my train of thought and... shiny! I'm close, though. To the geekily-inclined, it really is quite fascinating, communicating between Flash and the HTML document where said flash document is housed. I've got that done now, I'm just creating the user interface... All my variables are named after foods I'm craving, and most of them start with the word "bacon."
Saturday, December 6, 2008
I've been having a bit of trouble sleeping lately, but that's very likely due to the itching and the such. I've felt as though I'm missing an integral part of my life, these last few days, since I haven't gone to the hospital since Wednesday...
In other weird psychological news, I can't help but feel as though I'm somehow "almost done" with this. I feel as though once chemotherapy starts, it'll all be over, soon enough. I hope I'm not deluding myself, in thinking this was the hard part. After this, if only I can monitor my health with sufficient care, and manage to not get sick, I should be on the road to something good.
Some day, someone will ask me "What was it like, having cancer?"
I will answer "Well, in the beginning, it was very, very... itchy."
In other news, commenting on this blog should be simpler, now. I never actually went through the settings, and it seems blogspot likes to default to punishing people for trying to use it.
Energy's up, but so are all the symptoms, save for fatigue. And that includes stupidity. "I can't brain today, I have the dumb." But the ranitidine is working, so that means the codeine is working, so that means I can turn my head again. The codeine might also account for "the dumb", now that I think about it. Hmmm. All in all, I call it progress, nevertheless.
Thursday, December 4, 2008
That wiggled and jiggled and tickled insider her.
She swallowed the spider to catch the fly.
I don't know why she swallowed a fly.
I guess she'll die.
I'm taking stomach meds to counteract the pain created by my other pain meds that I'm taking for my neck.
They wanted to give me morphine, but then I thought of this picture of Amy Winehouse and decided against it.
Here's to you, acetaminophen/caffeine/codeine, and here's to you novo-ranidine ranitidine HCL! (the latter's basically zantac at twice the dosage... and it was a lot more dramatic from over here, 'cause I took each pill after I typed its name. I'm so awesome).
Wednesday, December 3, 2008
1. Thankfully, the most frequent reaction is along the lines of "Well, shit..." and then life goes back to normal. You can talk to these people about it, but you are not the cancer. They hopefully are comfortable enough to bring up the subject, and all the world is green. To the 90% of those around me who've adopted this approach, thank you for being amazing. I've come to find a great deal of support and friendship from a number of great individuals. Thank you all, a million times over.
The other two remind me of that Bart Simpson quote: "Dad, your half-assed underparenting was a lot better than your half-assed overparenting".
2. Jackasses who don't seem to click in. They will either belittle your illness, along the lines of "Ah, it's got a good survival rate, you've got nothing to worry about!" or are just plain fucking clueless. "You're going to be so sick during chemo..." Thanks, asshole, I needed you to remind me. Since this is my blog, I shall make a recommendation -- these people should be fucking shot. I don't know if it's either a) plain stupidity, b) denial, or c) attempt to show some basic knowledge of cancer and chemotherapy, but I'd rather not have to give people the benefit of the doubt.
3. The half-assed overparenters in the equation -- the ones that will coddle you and treat you like a fucking invalid. If I get one more "take it easy there, big guy", I'm going to fucking snap. Yes, I know I'm sick. Yes, I know I stand a higher-than-comfortable chance of fucking dying from this thing. I know I'll spend the rest of my life (that is, if I'm not dead in the short-term) fearing a relapse. But don't fucking treat me like I can't take care of myself! If you didn't know I had cancer, you'd be telling me to stop being a lazy asshole and get some work done, so you can take your self-righteous pity and shove it.
Here's a tip to those in the last two categories: When you are clutching at the last bit of normality in your life, when everything seems to be falling apart around you, having your nose rubbed in your misery, or being identified by it, is of absolutely no help.
Thanks for attending my educational seminar.
Gallium scan was boring, but unobtrusive.
Intro to chemo seminar taught me some horrifying things. For example, given my lack of white blood cells, should I get an infection, I won't actually have any physiological symptoms. No swelling, no nothing. I will have to monitor my temperature like a hawk... A hawk that is very, very concerned with his temperature. Apparently, if I don't, the next step is generally death.
I'm starting to see why the death rate is so high for a cancer that is supposedly rather treatable.
I can also look forward to various gastrointestinal issues, I'm told, and my hair will fall out around day 15 of my cycle. That puts me around christmas time, so maybe Santa can get rid of Rudolph, and have me light his way, with my shiny scalp.
Tomorrow I have yet another seminar at the hospital. Then I have to meet with my supportive care nurse, and try to get some different pain meds. The current ones make my stomach feel like it's full flaming cotton candy and fists. I don't like either, for the record.
Energy's up a bit, but so's the night sweats and the fucking incessant itching. I'm about to bore straight through my right ankle, and a couple of places on my head. Nothing seems to make it go away... However, all symptoms, save for fatigue, are supposed to go away within days of starting chemotherapy. Sweet mercy fuck, I hope so.
Monday, December 1, 2008
I'm having some truly strange dreams lately. For example, I had a nap earlier, and I dreamt I had a cake box on the floor in the back of my car. When I look again, it was smeared all over the back seat. If you want some cake, I think it might still be there...
That dream wasn't that bad, though. Weird, but not bad. I dreamed earlier that I was menaced by an oversized fox, and the only way I could keep it at bay was to occasionally flail my arms upward, and for some reason think of Peter Gabriel lyrics.
Then there was the train station/weeping/Buddhist monk dream, but that's just weird.
Tomorrow I have my Intro to Chemotherapy seminar, and my Gallium scan. I don't look forward to either of them... Still frustrated... It'll be almost a month since I got diagnosed, until I will receive treatment, and I can feel myself getting worse each day. The pain in my neck is increasing, and the T3s they gave me hurt my stomach. So it's either stomach or neck pain. Neither is good. Also, my energy is shot, and it's getting worse on a daily basis. I'm in bed at, if not shortly after, 9pm. Cancer sucks.
Sunday, November 30, 2008
I think I can manage work and the like, if I get stuff done Monday to Friday, and just sleep non-stop over the weekend. Maybe, just maybe...
Saturday, November 29, 2008
My mornings are generally pretty good, lately. Regardless of how I've slept (which generally is pretty poorly), I have a fair bit of energy for the first couple of hours. After that, it gets pretty murky, and I don't know what affects it. My diet is pretty constant, as is the number of hours of sleep I get (8-9, plus a nap most days). It's been worse, but days like today, it feels like absolutely nothing can get me moving.
I really miss biking. I need to move, but between the lack of energy and the cold and the ice and the such, I'm really not feeling it. Plus, my hip/ass is still very sore from the biopsy. It doesn't hurt on its own, but getting up/sitting down/turning in bed leads to much discomfort. Probably walking for too long is not a good idea either.
Just over one week until I start chemotherapy. I still don't know how to feel about that. Scared yet excited. It's kinda like the prospect of skydiving, but in this case, the activity in question is likely to extend my life, not shorten it. Or at least I can hope as much... I've still got a ton of unanswered questions, which I won't be able to resolve until the time comes... Will I have a violent reaction to the chemo? Will I need an intravenous line? Will it work? What if it doesn't work? Will I require a different combination of medication?
Gah. There's no way to say it, really, but I really really just want to be healthy again. For some reason, that made me chuckle.
Friday, November 28, 2008
I was a bit relieved yesterday when my doctor said I might not need a port-a-cath, or even a line in my arm, but for the sake of my veins and the OH DEAR LORD QUIT STABBING ME, I'm starting to warm up to the idea of them poking plastic rather than flesh.
So, let's see if I can finish my entry from two days ago, without an emotional breakdown...
I wish I were healthy again. I wish this hadn't happened. But wishing doesn't get me very far. But where I am now, I can't help but become enraged when I see people throw their health away, and that's for two reasons. One, is that I got sick "for no reason". I rarely drink, I'm not a smoker, I've been a healthy(ish) weight for six or seven years, and I try to eat relatively decent food. Seeing people put themselves in harm's way makes me boil with rage. The other reason is, these people are causing such a huge drain on the system. From a strictly utilitarian view, the more resources that get doled out for people's poor choices, the less resources are for people who got fucked over because of a genetic fluke, or something. I know it's a very relative argument, but regardless...
In other news, I have a new growth on the left side of my neck, somewhere behind my jugular. It makes me wonder if it has anything to do with the low-level headache I'm having. I'll be eating my words very quickly, I think, but I can't wait to start chemo. I'm told that lymph nodes may shrink within days of starting treatment, and I can't deny looking forward to that.
Also, on a final note, I'd really like to add that I'm extremely thankful for all the support I've been receiving. You people are great. I know I'm an ornery old goat when it comes to accepting help, but it's very much appreciated.
Thursday, November 27, 2008
Wednesday, November 26, 2008
I got my flu shot today, as per my doctor's instructions. Left arm is already rather sore. Good, good, nice to see life continues to suck...
A number of people have said "It's good you're getting treatment this quickly", but really, it's not that quick. I realize some people have to wait longer than I do, but I had my first tests on October 17. If they figured out that a 23 year old male with classic Hodgkin's symptoms wandered in (and I mean, having lost 30-35 lbs since the start of the year, drenching night sweats, severe weight loss, absolute fatigue, and oh, yeah, a big fucking lump in my neck), and if they had been so thoughtful as to get me in for a biopsy right there and then, I would have been on the path to much speedier recovery. But we can't all have Dr. House to cure us, now do we?
I'm not sure if I've mentioned this before, but there's another symptom of Hodgkin's that I hadn't really been experiencing too badly, until recently. And that is mad fucking itching. It started on the back of my head, but now it's starting around my ankles, as well. It comes all of a sudden, and it itches so bad, it hurts. It's followed by intense scratching, and more pain. Cancer fucking sucks.
Tomorrow I look forward to the distinct pleasure of having a needle jammed into my hip bone, to draw out some marrow. Oh, also, given the spread pattern of my cancer, my survival chances dropped about 10% to 75%. Still good, I suppose, unless you count the fact that one out of four people in my situation die from this.
Funny side-effect of it all. I'm starting to loathe the stupid choices people make. I can't stand people who smoke or damage their bodies with ... just poor choices. I can't possibly describe how much I wish I could wake up from this and be healthy again. I'm going to stop this entry now.
Tuesday, November 25, 2008
HOLY SHIT MY NECK HURTS. A LOT. I can no longer turn my head to the left more than about 45 degrees, or even lift my left arm properly. Oh yeah, tilting my head to the right is completely out of the question. I first thought I was sleeping funny, on account of the fact that I've been sleeping with a pillow lately, despite the fact that I never use one. I went back to not using one last night, and nope. It's just getting worse. Cancer sucks.
Okay, I think tea water is done heating in the disgusting, disgusting kettle. I don't think I can drink that. I don't want some viral infection on top of everything.
Only 3 more hours before it's disease time, all the time! (aka, seeing doc).
Also, I've begun to instinctively flip off the cancer center every time I drive by it. Good start.
I really don't feel like writing this, but I'll toss it out while it's still relatively fresh...
Thursday, nov. 27: bone marrow biopsy
Friday, nov. 28: MUGA scan, and first part of a gallium scan.
Tuesday, dec. 2: Intro to chemotherapy info session, second part of gallium scan.
Wednesday, dec. 3: Income maintenance & Drug coverage info session
Monday, dec. 8: more blood work, doc's appointment re: chemotherapy
Tuesday, dec 9: chemotherapy round one
Tuesday, dec 23: chemotherapy round two
No radiation therapy for me, it seems, and that puts me at ease. Doing ABVD chemo. 12 sessions. Cancer sucks.
Monday, November 24, 2008
Tomorrow I see my doctor. Turns out it's not an oncologist I'm seeing, but rather a hematologist. The fact that it's lumped in with blood cancers scares the crap out of me. I'm really worried, for example, that the current treatment will open the door for leukemia later on.
I've started a rather extensive list of items of concern, to discuss with my doctor. Things like side-effects, pain management, previous medical issues, etc. Speaking of pain management -- holy hell, my neck hurts lately. I was noticing today that I used to have a distinctive beard growth pattern over my Adam's apple. It's since moved half an inch to the left, as a result of the swelling. I also miss my clavicles. I'd love to know when the swelling will go down, or when the night sweats will stop. Especially the latter, to be honest. If there was one thing I could change about Hodgkin's, or at least my experience with it (aside from the obvious, where it magically goes into remission overnight and I'm cured), it would be the sweating issue. If I can't get decent sleep, I'll feel like crap, and if I feel like crap, well, it just makes things worse.
All these thoughts, and I feel like I'm screaming inside my own head, but there's nothing coming out, out here.
Sunday, November 23, 2008
I had a good day. In the two hours of alertness before I picked Melissa up from work, I spent some time with my father, which is something I haven't done in... too long? One of the curious side-effects of the crazy weightloss I've experienced is that my feet shrank about an entire size. Also, my shoes were on the, how do you say, "ratty" side. So, my father and I went out and found me a pair of appropriately-sized pontoons, and then had lunch together at Quiznos. It was much fun...
Later on I went out for coffee with Rob, and as though that wasn't enough of a bad idea (the coffee, not meeting with Rob), I had a few chocolate-covered espresso beans to boot. It's sad that it takes enough caffeine to resurrect Vincent Price to get me to feel happy and *gasp*, alive, but fuck it, I'm riding this one until I crash (I give myself 20 minutes).
So, I had a small mountain of work to do this weekend, and I got less than a molehill accomplished, and I'll be crying tomorrow as I try to crunch it all in, but in the words of Morrissey, "And I'm, not sorry for, for the things I've done."
Saturday, November 22, 2008
Basically got nothing accomplished today, which bothers me, but I'm not regretting the time I spent just bumming around with my family and watching stuff on youtube.
I realized just a little while ago, while out with a few friends, that although I intended not to talk about me being sick more than necessary, I steered the conversation to that over and over. I guess it's hard not to talk about the big pink elephant in the room. Especially when the elephant lives in your neck and his name rhymes with ...dancer.
Oh, I'm so witty. Also, look ma, no (amish) beard. Also also, why has no one told me that my left eye is so damned googly?
Friday, November 21, 2008
One of the first notable symptoms of Hodgkin's, that I then attributed to a cold I couldn't shake off, was recurrent, drenching night sweats. It's less pleasant than it sounds. Waking up every few hours in a cold puddle is... disheartening.
I guess one of the few positive aspects (if you could call it positive) is that of late, it hasn't been happening every night. It's mostly every second or third night, which means I can actually get some rest every few days. The fact that I'm an extremely light sleeper is not helping my cause at all.
Last night was one of the worst nights in recent memory, and left me pretty exhausted. Ergo, after driving Melissa to work, I came home and took another drenching nap. Did I mention that cancer sucks?
Okay, well, I'm now in close proximity with my parents, and I'm about to discuss the option of clinical trials. Wish me luck.
Thursday, November 20, 2008
I'm exhausted today. I slept ten and a half hours last night, but by the time I finished breakfast, I was ready to go back to bed. I was already in bed and intent of falling asleep at 6pm, but the fact that I had really eaten only a bowl of cereal today factored into my decision to stick around, have food, and write this.
You know those days when everything that can get caught on something does, and then drags other stuff down with it? That's what life's been like lately. I don't know if my general lack of grace lately is doing it, or I'm just noticing it more, but I'm getting stuck on everything and making a big mess. I now realize this paragraph almost sounds like an euphemism for something. No, I mean it literally. I was in Bulk Barn today, and my scarf somehow got caught on a shopping cart and kind of clotheslined me. Let me tell you, when you have enlarged, painful lymph nodes in your neck, that sort of stuff is just no fun.
Although I know I will get through this once I start treatment, I'm afraid I'll go into a coma before I get there. I have five more days to go until I see my oncologist, and I can only hope they stick me with some treatment soon. I wonder how long until I get some energy back.
I've been planning to do this for a few days, but I keep forgetting. I'll be ordering a couple of "For Dummies" books in a bit. One's on Chemotherapy, the other is on managing Chemotherapy side-effects.
Well, looking at my own picture makes me want to weep for myself. And as per yesterday's post, my beard is still too long. I'll see if I can rectify that in the morning.
Wednesday, November 19, 2008
Also, my beard is much too long.
Tuesday, November 18, 2008
I'm at that stage now where I'm telling everyone I'm sick. Much as I "knew" beforehand, and tried to "warn" people about what eventually became reality, it still came as a blow to me, and it's doing much the same to my friends and family. Yesterday I had a few crushing moments -- finding out that I actually do have cancer, which eradicated the last bit of false hope I had for an alternative diagnosis, and telling the people I love that I'm more or less fucked. The latter was a lot harder than the former, and altogether a lot harder than I thought.
It's scary, it's demoralizing, and it's aggravating. I don't know if I'm stuck in the "anger" stage of grief, but I'm still really pissed off about my situation. I'm 23 years old, and I have a potentially terminal illness. There's no sense of fairness, there's no sense of equality, and sure as hell there's no sense of compassion or understanding.
I was hoping to keep this entry from becoming so negative, but much as my overall attitude has been for my situation, I'm not going to hide from this, and I'm not going to sugar-coat it.
I guess this next part, however, should have gone in my last entry. It's the purpose behind this blog. At my most selfish, I know there's a lot to suggest art therapy and talk therapy have hugely restorative effects. Yes, I do hope this blog will help me feel better, and get better. On the other hand, I have a small grandiose but rather altruistic hope. Regardless of the course of my treatment, I hope that if anyone finds this blog, whether s/he is fighting cancer, or has a loved one in the same position, finds some inspiration. I can't speak in terms of further down the road, but at this stage, I find that despite my extensive support system (for which I am extremely grateful), I still feel incredibly isolated and alone. Thus, I hope to talk about my experience from the first symptoms, through to the completion of my treatment. Should anyone suffering from Hodgkin's, or any other potentially debilitating disease ever find this blog, I hope s/he will, at the very least, know they're not on their own.
Monday, November 17, 2008
Over the next few months, I plan to document the ups and downs of my treatment, and life in general, as well as add a daily portrait. To anyone who will read this on a semi-regular basis, I apologize in advance for not being more handsome.