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Update

deejay435 — Tue, 17 Jun 2008 04:30:06 GMT

Hi everyone...

Some of you already know this but I have moved to Hospice. The cancer is no longer treatable, and all the chemo I;ve had has caused my kidney failure. My blood pressure is too low to continue dialysis-so that's no longer an option. So I've decided on Hospice. It's very wonderful here-much better than the hospital was!

I'm at peace-I'm honestly happy.

Thank you all for your friendship and love over the years! I will miss you all.

Love you all!

Hee!

deejay435 — Sun, 25 May 2008 04:57:32 GMT

Get Your Cyborg Name

So far, so good

deejay435 — Fri, 23 May 2008 22:44:01 GMT

First day of the trial chemo. No stomach ailments at all. Yeah!

The bottles are like six inches high and 2 around, I thought 'Oh no! More horsepills'! Nope. Pills are teeny, tiny and don't even cover the bottom of the bottle. Must of needed the big bottles for all the info they have typed, so small I needed someone to read it for me, on the bottle label.

Here's to this one being the one that works!

It's been forever since I updated....sheesh!

deejay435 — Sun, 18 May 2008 23:42:44 GMT

Hey everyone,

I'm still hanging in there.

Well, sadly my last CT scan showed tumors growing again. The big one by 2.5 centimeters. One at the top of my chest has grown so I can actually feel it. Ick. One formerly tiny one in my adductor muscle of my right leg has grown, and started causing lots of pain. BUT...at least some of that was from pinched nerves and spinal stuff, since the chiropractor has made marvelous headway in getting rid of that pain.
Left leg, not so much. My sleep schedule is all out of whack because I don't sleep for more than 2-3 hours at a time because of the pain that starts up. Then I have to get up and dose with pain killer, or sit here at the computer-because the desk chair does wonders for relieving the pain.

But, I start a new trial on Thursday that has had some significant progress for others with my kind of sarcoma. So I'm hopeful about that, and really looking forward to starting.

My glasses prescription is too weak now, my eyes have gone downhill and I can't read with them any more. So I went for an eye exam yesterday. They were able to bill my medicare since they coded it as a high-risk exam because of the chemo. Plus they're putting the new lenses in my old frames, saving me the cost of frames. Plus they gave me 50% off on my new lenses because my sister works there. So I'm getting new glasses for 47$! Can't WAIT for them to come in next week.

For her birthday, E decided she didn't want any presents again this year, and wanted people to bring donations that she can take to the humane society instead. She still got a present from me though, since I had bought it Christmas time. But most people got her things on the donation list. I just think that's a very unselfish thing for a 5-year-old to do for her birthday. And it was all her idea, she came to her parents about it after seeing it done on Animal Planet. She was just as excited opening dog bowls as she was toys. I was very proud of her!

I haven't been paying attention to spoilers, nor to casting information so I had no idea that Gary Dourdan's contract was not extended to next year. Meaning I didn't know Thus was Warrick's last episode.

They killed him off! I can't believe it. I think it was a good move, drama-wise, and scripting-wise. I think a lot of people whose interest in the show has been waning, like me, are now curious about next season, like me again. But man...I was blown away. (Kinda like him. Bad pun...sorry.)

That's all my news. My family continues to be incredibly supportive of me, as do my friends. I'm really very lucky in that respect. And so grateful!

I've missed chatting with you all.

Dissapointed in people tonight

deejay435 — Sun, 27 Apr 2008 10:27:24 GMT

Mom and I went to see Evita tonight, which was great. But three hours sitting in a cramped chair did some serious damage to my already weak and painful legs. (The cancer has really mangled my left leg, and something else is mucking about with my right leg.) To the point that I haven't slept all night from the pain, and also that I was very unsteady walking out of the theater.

At one point my left leg started giving out on me in the very crowded lobby. I began to stumble to the left. My mom was on my right side, and tried to grab onto me, but as I was falling to the left, she had a hard time. I was calling out for help, and reaching out for someone to steady me and all of a sudden this lobby which had been packed full was completely empty at my left side. People actually walked away instead of offering me a steadying hand.

Sometimes people really do suck. It made me very sad to think no one would even bother to hold out their hand so I could keep from falling.

Fortunately mom is strong and kept me upright.

I think I met an angel the other day

deejay435 — Sun, 20 Apr 2008 04:09:45 GMT

I've been pretty down lately-feeling really hopeless because I know they have no cure for this cancer of mine. And lately that's been hard to take. I used to be able to think "Well, this is just like having a chronic illness, that's all." But lately, that thought's been hard to hold on to.

On Thursday, I went up to the hospital for my chemo. Before I get that I have to stop in the lab to get a blood test. So I gave my name and sat down, and a few moments later a woman sat down beside me. She looked at me and asked "How have you been doing lately?" Like she knew me. I didn't know her so I just answered with my usual "I've been good."

She nodded then said "Chemo really kicks you doesn't it?"

I answered "Yes it does, and this is my third time being kicked by it."

She said something else then, but I don't remember what it was. Then she said "The important thing is to keep kicking back." She paused for a moment and said "You know, just because something isn't curable, doesn't mean it's not treatable. You just have to look at this like it's just a chronic illness. Remember that."

Then she was called in to give her blood and I didn't see her again, even when I was called in a few moments later.

The more I thought about that conversation-that tapped into exactly how I've been feeling lately, the more sure I am that she was an angel.

Update

deejay435 — Tue, 08 Apr 2008 22:34:18 GMT

Been a rough week for me. I got sick a week ago Sat-thought it was just chemo-type nausea but it lasted all week. Boy was it bad. I ended up at the hospital on Thus because I was so dehydrated. Was there 12 hours, spent 6 getting IV fluids. I didn't really start feeling better again till today-even over the weekend I had intestinal stuff, and a fever.

I went and stayed with my parents. I had something of an anxiety attack when I first got sick and didn't want to be alone. Came home yesterday. But today was a pretty good day, despite a little pain-all I needed was one pain pill, and that was the first in over a week. So there's that good bit.

Hope everyone is doing well! If I missed anything important on the Friends List point me there, I haven't had a chance to read my FL in a couple of weeks.

Quick Update

deejay435 — Wed, 12 Mar 2008 03:17:49 GMT

Not having the best day the past couple. One of my best friends was visiting from Florida, that was great, really great, but since she left I've been having a little more pain and my seasonal depression has kicked in again. One of my other best friends just reminded me that since she's known me, I've gotten depressed in March. Wish I could figure out why. Up North it could easily be Seasonal Affective Disorder, but not when I lived in FL.

Anyway-I'm also very, very bored. So if anyone has any distracting links to pass on, I'd be very grateful.

Love you all for being there for me so often!

Good news and bad news

deejay435 — Fri, 07 Mar 2008 02:08:23 GMT

The good is, I believe this chemo is working already. The pain has gotten SO much better in the last week, it's amazing. I'm down from 2 separate narcotics every 4 hours, plus a muscle relaxer to one pill for overnight and maybe one during the day. Some days none. And the muscle relaxer only every few days to a week.

The bad is my platelets are scary-low and I couldn't have my dose of chemo today. Explains all my bruising and bleeding. And extreme fatigue.

Hurry up and recover, platelets!

The Lion King

deejay435 — Sun, 02 Mar 2008 12:26:44 GMT

I hadn't been expecting all the dancing in the isles, and I really liked that. I like it when stage shows come out into the audience.

The kids playing young Simba and young Nala were extraordinary. They were really exciting to watch, and had such powerful voices.

The colors were fantastic, they just swelled and morphed from one hue to the next almost organically. I loved the part where Mufasa's head is shown in the stars-that was especially well done.

The costuming was superb. Especially of the animals. They had this little wheeled cart, with gazelles flowing around it, showing their pack running. It was beautiful. Then in act 2, when Scar had taken over, and ruined pride rock they had the same contraption, only now the gazelles were no more than skin and bone. Very eerie and well done.

The only complaint my friend and I had was Rafiki really didn't speak in any way that we could understand, most of the time.

My only other complaint, I guess, is that our venue is so small, that our stage is entirely too small for such a big production.

We have Evita left this year, and we're in the process of getting our season tickets for next year. (Especially to save our good seats, because year after that, we get Wicked!)

Thanks Everyone

deejay435 — Sat, 23 Feb 2008 12:42:47 GMT

Thanks for the hugs, prayers, and good wishes. I've decided that there is no reason to go on thinking that this chemo won't work. It very well may. I'm not ready to throw in the towel and give up.

The fight just got a little harder, that's all. I can do it. Especially with all the support I've been getting, both from my rl friends and family, and my on-line ones as well.

The side effects yesterday were bad. I've been lucky when it comes to the stomach issues up till now. But I have a new med for the worst of the nausea and throwing up that I hope will make today go better. I took it just now, and in another 40 minuted will take the chemo. (Too bad there is no correlation between the suckier the side-effects the better it works!)

Really bad day at the doctor's

deejay435 — Thu, 21 Feb 2008 23:19:30 GMT

Had a CT scan monday, the tumors are growing again. The one in the soass muscle is so big it looks like a baseball.

I've been afraid of today's outcome for some time. I can't have any more Ifosfomide, because of the damage it's done to my kidneys. But there is little else left to try.

There are some clinical trials I would have to go to NY or Chicago for-and the expense of that would be prohibitive-but the results haven't been very exciting anyway. There are some promising new drugs for OTHER types of Sarcoma, just not mine.

One option they gave me was doing nothing, and just treating the pain. Hearing that was so frightening.

We're trying a "novel" approach, with two new chemos-which to me sounds like desperate measures or a Hail Mary or something. One is a pill I take daily for two weeks, the other is an IV I get once a week after each week of pills. Then I'm off for 1-2 weeks.

I haven't been this scared since I found out I had cancer in the first place. I really don't want to die.

The only bright light was they were able to give me the pills but bill it to my hospiralization part of my insurance, instead of the pharmacy part. Cause the pills are 100$ each. Each pill. And I need 14 a month.

Doc's appointment

deejay435 — Thu, 31 Jan 2008 21:07:09 GMT

So the doctor wasn't concerned about the pain because it's not the same kind of pain the tumors caused before, more muscular. And my phosphorus level continues to be low, which causes muscle pain. It's actually gone down in the last week, and the pain has increased, so there might be something to that. I have to remember to take those stupid meds!

I go back in three weeks and we'll reassess. No new treatments right now.

Prayer and good thought request

deejay435 — Thu, 31 Jan 2008 02:10:18 GMT

Hey everyone,

I go back and see my doctor tomorrow to see where we go from here. Like I posted before, I can't keep taking the old chemo anymore, it's done too much damage to my kidney's. Scary thing is, that's the chemo that has worked the best, and had the best chance of working.

I've started having pain again the last 2-3 days, so we're going to need to do something-I just don't know what. I'm hoping they've come up with something new in the last year, since I started the old chemo.

So if you would keep me in your thoughts and prayers tomorrow, I would appreciate it.

Meme

deejay435 — Sun, 20 Jan 2008 03:37:50 GMT

Seen with sjhw_tolerance And I think I got the same as her.

Your Expression Number is 4

Practical and down to earth - everything in your life is organized.
You are a great writer and teacher. You never forget a detail.
Very patient, you have the ability to cultivate talents in difficult fields.

You also tend to have an artistic side. You'd make a great architect or classical musician.
You face your responsibilities with a positive attitude - and you always get things done.
You are serious, sincere, honest, and faithful.

Sometimes your strong sense of responsibility leads to frustration.
You also tend to develop strong likes and dislikes, which border on dogmatism.
At you're worst, you can be a dominant disciplinarian.

What's Your Expression Number?

Meme-Did I deserve my HS diploma?

deejay435 — Tue, 15 Jan 2008 19:17:20 GMT

You paid attention during 97% of high school!

85-100% You must be an autodidact, because American high schools don't get scores that high! Good show, old chap!

Do you deserve your high school diploma?
Create a Quiz

New Kitty

deejay435 — Tue, 15 Jan 2008 18:24:55 GMT

I went to the humane society yesterday and adopted a new kitty. He's a tiger striped cat, sort of gray and brown and black, 2 years old, very affectionate. I call him Darwin. As soon as I get pics I'll post them. My mom says he's a skinny ugly cat. He IS too skinny. But he's adorable. And he constantly wants to be by my side, or on my lap. He's way more adventurous than Curie was-already he's found a way onto the counters, and loves to stick his head under my leaky faucet. Right now he's trying to get into my lap as I type. He's a keeper.

The latest from my doctor

deejay435 — Mon, 14 Jan 2008 02:22:56 GMT

This is kind of what I've been afraid of. The good news is my latest CT scan showed the tumors are stable, so the chemo was working.

The bad news is I can't have any more of that chemo. It's been too rough on my kidneys. My bloodwork shows too many messed up electrolytes. Enough so that I have been having symptoms from the low phosphorus and potassium. So no more Ifosfamide for me.

If the tumors start to grow again, they'll try another chemo. What scares me is I've tried two others, and only the Ifos works. :(

What kind of nerd am I?

deejay435 — Sun, 06 Jan 2008 02:11:17 GMT

What Be Your Nerd Type? Your Result: Social Nerd You're interested in things such as politics, psychology, child care, and peace. I wouldn't go so far as to call you a hippie, but some of you may be tree-huggers. You're the type of people who are interested in bettering the world. You're possible the least nerdy of them all; unless you participate in other activies that paled your nerdiness compared to your involvement in social activities. Whatever the case, we could still use more of you around. ^_^
Literature Nerd
Gamer/Computer Nerd
Science/Math Nerd
Drama Nerd
Anime Nerd
Musician
Artistic Nerd
What Be Your Nerd Type? Quizzes for MySpace

I have to admit, that fits. Even if I am still a nerd. :)

The Impossible Quiz 2

deejay435 — Fri, 28 Dec 2007 15:13:13 GMT

Impossible-Quiz.com - The Impossible Quiz

I just want to know what the heck is a fartburgler?

Thank you so much!

deejay435 — Sun, 23 Dec 2007 14:13:57 GMT

To the person who gifted me with extra user pics and renewed my paid subscription! That was such an incredibly nice surprise!

Love and hugs and warm thoughts!

Amazon.com and why they suck...

deejay435 — Thu, 20 Dec 2007 16:30:58 GMT

I ordered a book last week, for my dad for Christmas. (Something to help him use his hands as his therapists have recommended to him.) The website assured me that I was ordering in plenty of time to get the book by Christmas. It listed the book as in stock. It STILL does. Yet I check on it and get notice that it won't be shipped till the end of January.

YET one can still order this book, and with two-day shipping, according to them, get the book by Monday.

I called their customer service who swore he'd get me the book by Monday, then changed his mind saying it's in the 'shipping process' (how I ask you, when it says it's not due to ship till Jan 28th?) and it will not be received before Christmas, nor can I cancel the order and order it with two-day shipping.

I just fired off a nasty email. My friend Jules has had problems like this from them in the past. Let's hope my nasty emails are as effective as hers. From now on though, I'm going through BarnesandNoble.com

A friend's entry

deejay435 — Tue, 18 Dec 2007 02:08:05 GMT

My friend Oooober has entered the Stargate SuperFan Contest.

Here's her entry. If you like it, give her a rating and a comment. She gets very excited by them. :D

Back online

deejay435 — Tue, 18 Dec 2007 02:06:36 GMT

Thanks for your support everyone. I'm starting to feel like myself again. But nboy is my typing rusty! Amazingly so, after just a few weeks not online much.

And they say the internet gives you no skills!

Sam and Vala friendship fic stories up!

deejay435 — Tue, 27 Nov 2007 20:05:16 GMT

Go to gate_women for some great stories! Give the Sam and Vala writers some love folks!

And don't forget to click back to the previous page-some of the stories are there too.