There are so many words for vomit... which one shall I use?
I'm so tired. Sleeping is all I want to do. Felt the same last week up until the weekend when I somehow perked up for 4 days, drove 2 hrs. to Toronto, partied (lightly) for New Years. The day after we got back home, the fatigue set in again. Is it depression? Is my fibromyalgia back? It's been years since I've had a fibromyalgia episode.
I attributed the fatigue last week to steroid withdrawal but after my 4 days of chipperness I thought I was over it. Makes no sense. I'm scared something is really wrong. Do I have tumours near my heart, in my liver, somewhere else that would account for the fatigue? I don't know much about physiology.
I've been crying a lot. I guess that optimism, strength, cheerfulness, inspiration I had been feeling for a couple months was steroid induced. It wasn't me, it was the drug... damn, that's a disappointment. I really hope the steroids weren't just masking this mood, but that this mood is just a withdrawal symtom. I could sleep 24 hrs. a day. But I have to get up for certain things, and to appear ok. Today I went to a movie with my dad. I nearly fell asleep. Napped from 11:30am-12:30pm (had to get up for movie) and 4pm-9pm then Derek woke me up. I made myself get up to eat something. I have no appetite, the thought of most things makes me queasy, but it is so important to stay nourished. I had PB&J on an english muffin, grapes and applesauce. Then I perked up enough to watch The Black Dahlia on DVD. I liked it, but found it really difficult to follow. Now it's 12:30am and I'm about to pass out.
Had a CT scan today. See my surgeon on Monday and I hope he has some preliminary results at least. Of course, I'm scared shitless what they'll find. I know of 4 probable tumours: breast, shoulder, side, armpit... scared he won't or can't take them all out. Especially the one in the axilla. That area has been pushed to it's limit. Unless they bring in a plastic surgeon, there is no tissue or skin left to stretch and sew back. And I don't want to be cut anymore. My breast will be mangled, my arm will get even bigger if they do the axilla. What if I get even more nerve damage? My arm is destroyed. I'm too embarrassed even to post a pic of what it has turned into: a big fat, limp and lifeless, deformed mess. But I suppose I should to document what I have been through. If I don't make it, at least this blog will still exist.
I don't know when to stop the cherry picking. But they do hurt once they reach a certain size and they grow at such an exponential rate they really can't be left in. But at what point do I try IL-2? Before I had said I wanted to cherry pick until it spreads to an organ and then I'd go to IL-2. But if I was one of the lucky 5% that gets a long remission or even one of the 20% who gets a short remission, I'd get a break, without getting more disfigured by surgery. But the treatment would make me unimaginably sick. I can't fathom going through it for an 80% chance I'll get no response. My brain hurts thinking about it. I'm so sick of being "sick". Yup, I'm throwing a fucking pity party and no one is invited because I'm too tired to socialize.
I want to do a combination therapy recommended by a naturopath either involving high dose vitamin C or mistletoe (or both) and a bunch of other supplements, but we just can't afford it. Mistletoe is the #1 alternative adjuvant treatment in Europe (google it, it's true) and while VC by i.v. is controversial, even some doctors in the states prescribe it as a last resort and there are many many documented cases of complete remission in different diseases, not just cancer. But these are anecdotal cases and studies have not shown it to have significant survival benefit.
It costs $140/week or $50/week if I can find someone who is willing to administer it to me intravenously outside the Naturopath's office. I don't have any nurses in my family though and can't find anyone else. It sucks, because as if we can afford $140/week on top of the $200-300 we already spend on supplements. I know, I know, it sounds crazy, but because I've been alive for over 2.5 years since it recurred in my lymphnodes, and so far has only recurred in soft tissue and nodes, it's impossible to say whether or not the supps have had a role in this. I can't just stop them, in case they have!
Well, this has been pleasant. Needed to vent more I guess. I feel like I just puked up all my worries (ok, a fraction of my worries) all over you. What a mess. I feel like I may have more to come though so beware!