Sunday, November 30, 2008
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.