Posts Tagged ‘cancer

16
Aug
09

Life…

Well, life is just life right now. My pain is pretty bad, it seems to be getting worse. The degenerative problems with my spine are worse and my dr. thinks that something (a disc) is pushing on a nerve root in my lower back. I can’t stand up for more than 5 minutes at a time. It SUCKS. I am having what they call “occipital migraines” you can google it. It’s scary and I am not just having them occasionally, I am having 2 or 3 a DAY. I am calling my doctor in the morning so I can go see him about it. Something isn’t right, I hope we can find out what IS causing me to have them so frequently.

My Idol

My Idol

I do have to say I am on CLOUD NINE interview with my idol Ace Frehley! We seemed to get on well and he was laughing and stuff with me. When he mentioned the tour, I told him he had to come to Kentucky and he said something like “Yes and you need to be backstage”. WOOO HOOOOO! I am also talking to his awesome publicist Kymm and she is sending me the CD when it drops in September. I got to review the CD before the interview, and I listened to the whole thing and I have to say it’s AMAZING. There are a couple of surprise songs on there that I love like, “A little below the angels” and “Change the world”, “gengis khan” was also great. YOU need to pick up Anomaly when it comes out on September 15th. I am also working on getting a few other HUGE celebs in on the show. I can’t say who yet, but keep watching my tweets! 😉

I just want to say to Ace, thank you sooo much for letting me interview, for being so nice and caring. I appreciate it more than you know. Any other interview I have after this one will pale in comparison haha. Ace you are, as you always will be, my idol. YOU are the one who inspired me to play guitar, your music solo and with KISS got me through such a bad childhood…oh hell I just don’t have the words, just THANK YOU!

I’m tired now…..I’m out.

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26
Jul
09

what is CML?

I have had a lot of people ask me about CML, it’s kind of hard to describe what it is and what causes it. I have found two videos that explain it more thoroughly than I could…It also explains about the mutation and becoming “immune” to Gleevec (which is what happened to me). Anyhow, watch ’em if you want…and by the way,  they won’t pause on their own so you will have to pause the second one and watch the first one, then ….well yeah you get the picture. I’m out.

Part One:

Vodpod videos no longer available.
Part Two:

Vodpod videos no longer available.

19
Jul
09

just some random blathering…

Well, tomorrow I start week 3 of this continous chemotherapy drip. IT SUCKS. I have been through 5 rounds in 10 years and other than the first one they did to prep me for the bone marrow transplant this is THE worst. It makes me hurt ALL over. Even my skin hurts, it’s like the nerves are on edge or something. My clothes hurt to wear, the bedsheets hurt…I HATE it.

As I said in my other post, I shaved my head, I couldn’t watch it  just slowly fall out, it is just too painful. Now I am losing other body hair…I am pretty hairless naturally, no chest hair, back hair, butt cheek hair (haha). But I am losing my arm pit hair, and uhh, other places. I don’t like it. I DO NOT like it.  So what’s next–well my eyebrows and eyelashes…then I will look like a total fuckin’ alien.

My mother saw me the other day and just cried when she saw the bandana on my head. She said, “God baby, you’ve been through so much.”, heh, yeah, what an understandment. I’ve been through TOO much. My body isn’t what it used to be, and every fucking treatment they do on me weakens me more…weakens my body more. AH well, so goes life huh?

I know some of you think I don’t care, but I DO. So don’t give up on me…..I know some of you probably have, *sighs*. OK I can’t go there today, it will just  upset me. I have lost so many friends because of my illness, they either can’t handle it, or if I don’t do what they expect of me, they get upset and leave. It hurts and I can’t do this today. I can’t handle the upset….

Ok I think WordPress has a thing where you can rate my posts, blog, comments, etc. So have at it, just be nice for pete sakes hehe.

I’m out.

15
Jul
09

hair today..gone tomorrow..

Well, I woke up this morning with quite a bit of hair on my pillow *SIGH*. I then went to put it up in a ponytail, ran my fingers through my hair and came back with huge chunks of it.  I can’t slowly watch my hair leave me yet AGAIN, so I went into the bathroom, cut what I could and put it in a bag to give to Locks Of Love then buzz cut it, and shaved it slick. Yeah, I cried the whole time…

I hate cancer, I really hate it. I have puked so much, my eye whites are bloodied, every muscle in my body aches…I am so weak I can barely open a coke can. Cancer takes so much from a person, it’s a horrible disease, and I REALLY wish they would give up the cure for it. I know it’s out there……somewhere.

So yeah, all my long beautiful hair is gone again…and I sit here typing to you bald and wondering when the rest of my body hair is going to fall out.

I’m out.

12
Jul
09

just please understand! :-(

You know what? If you REALLY care about me and how I am, why not write me now and then to ask? Email me, IM me, CALL ME?!?!?!  It hurts me when people say they care, yet they never bother to talk to ME about how I am feeling? And to let my friends know…I am not HIDING from anyone. If I am not showing online to you, then I am not showing online to ANYONE, I am OFFLINE, probably resting. If I DO answer you but I am invisible, it simply means I am NOT staying online, but I am checking my IM’s to see if any of you have sent me one. I want ALL my friends to know that I do care, it’s not that I am ignoring ANY  ONE of you. I’ve got people coming from all directions, wondering why I don’t “hang out” with them, “IM with them”..etc. *SIGH* I’m TRYING the best I can, please understand!

This chemo is REALLY getting to  me. Everyone is different and everyone reacts to treatments differently. Some can go about their lives like they aren’t going through anything, others get SICK and I mean SICK. I have so much pain in my body right now, that even my CLOTHES touching my skin hurts. I can’t sleep with covers over me at night because it HURTS. Even my fucking hair hurts (which I will probably start to lose in another week or two). I’m sorry if I can’t do the things expected of me…or if I let people down. When I hurt this much, I feel anti-social. I don’t want to hang around in a chat room full of people, where I have to act like I am A-OK, and everything is freakin’ peachy. It’s NOT. It’s nothing against ANYONE, it’s just how I am feeling right now. I am just in a lot of pain, throwing my guts up so much I am bursting blood vessels in my eyes, having more  nosebleeds than ever. So how am I suppose to be around people and pretend that I am fine?

Yeah I blog, but I can write a bit, leave, come back, (things called drafts you know). I do my talk show once a week, and I have D there just in CASE I have to mute my mic and PUKE my brains out. My show is one hour long and I do it from my bed…just that ONE hour of talking on my show wears me out so much.

I can’t do things right now that require multi-tasking, going to different windows back and forth. I have the “chemo-fog” right now, my brain is REALLY foggy and I have a hard time using ONE browser window. let alone two or even three.

I’m sorry if everyone doesn’t understand. I am sorry if you think I don’t want to be your friend. I am sorry if I let people down, but again, I can’t help it, and I would hope my FRIENDS would understand.

*SIGHS HEAVILY* I am out. Can’t do this anymore. I can’t cry, I will make my headache worse.

11
Jul
09

eeeeeeeep!!

EEEP

 All I can see is “EEEEP” geez…I am weird with that number–so SOMEONE freaking comment and get rid of it! hahaha…

Not typing a big post, I am not feeling good, I am very weak, this chemo is REALLY getting to me. I am having bad sweats, nausea, weakness, PAIN all over my fucking body, so much pain anything touching my skin hurts..my clothing, the bed sheets..BLAH.

I’m going to shower….ta ta for now.

30
Jun
09

i feel…

I feel:

  • Ugly
  • Stupid
  • Forgotten
  • Lonely
  • Sick
  • Tired
  • Abused
  • Let down
  • Put down
  • Objectified
  • Lost
  • Hopeless
  • Hurt
  • Frustrated
  • Needy
  • IN FUCKING PAIN
  • Stressed

I start chemo on monday….I will be on a continuous drip of 2 chemo drugs for 4 days…off 3 days with oral steroids, back on again, off again, on again….my doctor FINALLY writes me something for this awful pain and guess what?!?! I CAN’T AFFORD IT BECAUSE I HAVE NO MONEY! Wooopie. I am so happy–pissed…no one around me has money, so I am just fucking screwed. And the topper of it all is these meds will make me lose my fucking hair AGAIN!!!!!!!!!!! Lucky  me…

My whole life seems like it’s been one abuse after another..if not from human beings from medications…I am sick of it. I am sick of having no money…being unable to buy my medications (which are, by the way, less than 50.00). I am just sick of it all…I’m trying REALLY hard not to cut right now. I have to stop typing now.

good night.




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