Friday, February 19, 2010

The fun is neverending!

Joe went back to work on Monday... red, swollen legs and all. Was supposed to take it easy. I told him not to push... if he felt okay doing 8 hours, do 8 hours... or 5 or 6... or 4... Yeah... he did over 9!!! He was trying to play catch up. I had called the doc's office about his legs... HE had called the doc's office from the truck, but we'd heard nothing back...

He gets home and goes in to change clothes... his legs are PURPLE! Looks like somebody beat him with a stick. OHMYGOSH! "I'm okay..." he says, says he... I go in the kitchen and I'm muttering... "Okay, if you're going to kill yourself, just do it... just get it over with, if you're going to die..." "Go ahead and call the doctor if you want to, but I'm NOT going to the hospital!" he says from the living room.

So, I call... I get the on call doc... "Hmmm... I can't imagine... Never heard of anything like that with any of the drugs he's taking... Hmmm..." I tell him, Joe reacts strangely to all of the chemicals... ask about it being a symptom of the hand and foot syndrome. He doesn't "think" so... he's going to read up on stuff and see if he can come up with anything. In the meantime, I've told him about our call in to OUR doc, with no response... I'm ticked... he seems ticked... Must have been, 'cause we no more than hung up and Dr. G called. "What's he doing now?" he says... He knows Joe... knows Joe's weird... I tell him what's going on. He says it IS weird, but doesn't seem to be life threatening, so just watch him... give him some Motrin for swelling (anti-inflammatory)... if it's hurt real bad, or gets worse (?!?!) either come down Tuesday for tests, or come in Wednesday on his lunch hour and let him look at it.

Well, Joe and I did some more reading ourselves... I, Doctor Suze, think it IS the hand and foot syndrome... one of the pamphlets talked about the severe discoloration due to constrictive clothes... heat... sweating... like might come from two pair of tube like socks... two pair of pants... That's my uneducated guess... Anyway, we do the "Motrin" for swelling... lotion up his legs and get his feet us. Seems to help...

THEN... dummy goes to work Tuesday and works... 10 1/2 hours! DUMMY! Comes home and can barely walk. Same as night before... get him in comfy clothes... ibuprofen for the swelling... lotion, and he is out like a trout. Out of the chair and into bed after a little bite to eat and his PM pills.

Wednesday morning... he gets up to pee... he's freezing, he says... check his temp... 101+. Tylenol... Email his coworker... he's going to be late... He can't get woke up... 1 hour, 2 hours... He calls Connie... he's not coming in. We're going to head to the doctor's office as soon as we can get around. I call the office, tell them we're coming in... We get there around 12:30, they take him back pretty quickly... The PA comes in, looks at him... orders labs... and comes back with the Doc. He checks him over... shaking his head... "What ARE you doing NOW?" lol! I think Joe perplexes him. He is NOT textbook, for sure. More labs. HE thinks Vasculitis. The chemicals causing the blood vessels to break down... Okay... could well be... he IS the doctor. Me, myself, and I STILL think it's part of the hand/foot thing. It started with the socks... the pants and belt pushing on his belly... THAT is where the discoloration started. He started wearing suspenders, and the discoloration on his belly is fading. His legs are starting to fade some... Still a LOT of edema... will NOT stay off his feet, or try to find a way to work with his feet up, even tho the Doc "prescribed" that (working with his feet on his desk).

Yesterday, he only put in 5-5 1/2 hours... about the same today... He's not going in until around 8:30... gives him another couple hours of sleep. Sleep is good. I don't know if he'll try to go in tomorrow at all or not. We're going to have a short check.

We've got to sit down this weekend and try to come up with a plan. May need to go ahead and try applying for SSD. It generally takes 6 months for it to go through. I don't know if he can make it another 6 months if this keeps up. And it seems the worse HE is getting, the worse I'm getting.

I have NEVER been a depressed person... Not to say I don't get blue when all of this starts getting to me, but typically, I can maintain a pretty positive outlook. When Les was sick, I belonged to the Hep C message board on WebMD. Met a lot of nice folks in the same, or similar boats. I think I ended up with Hep C overload... tho it was good to be able to talk to, vent to, people who knew where I was coming from. I could bitch and moan about things... compare notes... Some people were really sick, and their ugliness could really come out, but it was like a big Hep C family... I think with Les, tho... we had hope. REAL hope... He was really sick, but he was going to do the transplant and be better. It was a process... it was going to get worse before it would get better. But it WAS going to get better. We were fortunate that when he got put on the transplant list, the Navy put him on the TDRL (some sort of temporary retirement list) which gave us an income while we were awaiting his VA and SSD benefits to kick in. It was tight, and we did eventually have to file a Chapter 13, but we made it without too much todo.

With Joe... I don't know about a cancer support group. I feel like I am consumed with cancer. Cancer is my life. Everywhere I go, everything I do... I can't get away from it. There just is no normal anymore. It's all cancer. I don't have anywhere to go or anything to do to get away from it. Joe goes to work (he's back to driving my truck while the piece of crap beater he bought to drive sits in the driveway... he doesn't want me driving it because he's afraid it'll break down and I'll be stuck), and I'm here at home. I try to stay busy... to not think about things, and usually, I do pretty well. I try to refuse to give in to sadness and sorrow... but it's hard. With Les, we had so much hope. We HAVE hope that Joe will overcome this... that the chemo will knock the cancer back... It was jumping a bit ahead of us again, but in just the last 3 treatments, his markers have come down another 100 points... from 250 to 150. It's about 2 x's what it was before it started going back up... but still better than the 250. We KNOW that with God, anything is possible... God is the Maker of Miracles... He can do anything, and we can do anything within Him. But some things aren't to be, and if it's His will that this is Joe's time... I just don't know what we're going to do when Joe can't work. I don't know if he can go ahead and apply for SSD now and quit working in 6 months, or whenever they approve it. I have to say, SSD IS a good thing, but it also stinks... They make you wait so long... figuring you might get better, or die, then they don't have to pay anything out on you. And if he quits working... there goes his insurance... and we're back to being the welfare people... I just don't know what to do or think anymore. Feeling like I'm beginning not to care anymore...

I sometimes think if we hadn't gone through so much drama and trauma in the past few years thanks to our lovely ex-dil and Daniel... That whole thing just sucked the life out of us. And we were still dealing with that when the cancer came up... Now that's kind of resolved itself, and Josh is in a bit of a pickle... Joe worries over him, but I tell him, Josh has got to make his own way. We'll help him as much as we can, but he has walked into his situation with his eyes wide open, much as Daniel did... and been told about what he's getting into, and he KNOWS it. HE is going to have to work this out. Without tying Joe and I up in it. We did what we could for 7 months, and it was the beginning of the Daniel/Bimbo thing all over again, so we stepped away from that QUICK! God willing, we've got a possibility of him a different job than the one he's working now. Got to get his app finished and get it to my friend's husband... Fingers crossed, he'll start around $14 an hour as an operator. He is going to HAVE to apply himself tho... not working with family anymore... And girl is going to have to get her butt in gear too, soon as he can get her car put back together. Get a REAL job.

Jobs... Lordy...

Well, going to get back to busy here... Chasey boy is coming tomorrow night after our Feb. BD bash... got to get some more stuff put away... Boy love... I can't wait! (*"*)

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