Thursday, May 20, 2010

Dare we even hope?!?

Yesterday was chemo again... We had two actual NORMAL weeks!!! No diarrhea, no major issues of any kind (Joe HAS developed a... umbilical hernia... but they're not concerned with it unless it starts to cause him pain or discomfort). After all we've gone through the first part of the year... ohmygosh!!! To have... 4? 5? weeks with NO diarrhea... and Joe's back to work full time... and can even get overtime if he's up to it!!! OHMYGOSH!!! It's amazing! And he's feeling good... Tired when he gets home, but that's kind of normal for a 56 year old guy, I think... who gets up at 4 AM to go to work...

But the best thing... the thing that's making us rather excited... The PA came in yesterday. She was all upbeat and perky (maybe she DID hear me talking about her being so ugly and cranky at the hospital, and SHE'S taking happy pills now!)... We talked about how Joe's feeling... stuff... Then when she did his exam, and got to the feeling of his liver, which they always do... She poked... and prodded... poked and prodded some more... smiling, smiling... she grabbed up Joe's chart and said, "I have to show this to Dr. Geils" and out the door she went. Then HE came busting in... smiling, smiling... patted me on the shoulder, "Hi, how are you?" then goes right to Joe. "Lay back"... so Joe did. We're like... Oookay... And he's poking and prodding, pushing... thumping... poking... smiling... Smiling at Joe, smiling at me... "Remarkable... How long has he been on this treatment?" Gloria says, "So I was right?" and they're smiling... They look through his chart... count up the treatments... 3, 4, 5, 6... "Just 6 treatments... this is amazing... Remarkable..."

APPARENTLY... Joe's responding WELL to the new treatment... just since 2 weeks ago... his liver has shrank in size AND is softer than before. REMARKABLE! Most especially so, after last visit when the PA made the dire pronoucement that Joe will likely NOT respond to this treatment, since he didn't to the last one (well, he did... after just 2 treatments, or 3, his cancer markers had gone from over 3500 to just 315... then 200 something... finally down to 72 before they quit falling so much... then we were having the infection in the port issue, and he was missing treatments due to the rigors... then the acites... just so many bumps in the road... who knows if they'd have stayed the course?). That he'd likely be on maintenance treatment the rest of his life. After she walked out, Joe was kind of down, but I told him, DON'T discount God. He can work miracles, if he so chooses... He can heal you with or without the chemo. And now this week... the doc was still pushing around on Joe's liver, and I just said, "God is good." He said, "He certainly gives us our tools..."

Kind of holding our breath... they're going to run Joe's CEA again next treatment... that checks the cancer markers... 5 is normal. Joe was at 400 before the treatment before yesterday. It'll be greatly interesting to see what the number is after this treatment yesterday. We trust God to do with Joe whatever His will with all of this... We're just praying that He's truly smiling down on us, after all the valleys we've traveled in this year...

Join us in praying for our miracle. (*"*)

Wednesday, May 12, 2010

So far... so good...

Today is one week from Joe's last chemo treatment. They had reduced the dosage of the Iranatican again... and thus far... no diarrhea... Not even a niggle of it. Praise the Lord!!!

If a body has never dealt with chronic diarrhea... you can't imagine how wonderful it is to NOT have to deal with it. No more man pants (Joe is LOVING that!), no more massive doses of Imodium (tho we did do a few doses for the first few days just after treatment, and he IS still on the Welchol... which is supposed to be helping to keep the scooters at bay). We've been able to get out and about without the fear of him needing to go, and no bathroom nearby... Just breathing a HUGE sigh of relief!

He was able to work a little over 1/2 days last week... This week, he's gone back to full time... Was out yesterday getting his right eye operated on... no more cataracts! Aside from a couple of follow ups... going back at some point for a quick lasering of his left eye (the pocket that the lens sets in had just a bit of plaque on it... going to bust that away)... the eye business is done.

Likely not this week, or next... we're going to have to get him set up for surgery to remove his gallbladder. Dr. Geils and Dr. West are going to have to coordinate that, but it IS going to have to go. He's had 2 or 3 flare ups with it since we ended up in the ER Easter morning. Little bit "scary" as the gallbladder is another pre-filter (or co-filter) for the liver... The liver being compromised with the cancer already has the gallbladder and spleen working overtime...

Last trip to the oncologist... we saw the PA (Dr. G seems to have just turned Joe over to her... we were at least seeing him every other visit, or at least once every two months, but lately, it's been just her, unless Joe has issues that she wants the dr. to check on). Joe asked her about the last sentence that the dr. had written on his "back to work" note... about the condition not being expected to improve... actually to worsen... Her answer was that they still HOPE, of course, that the chemo will cause the cancer to go into remission... for the cancer markers to continue to go down... but since it's NOT happen thus far, in over 1 1/2 years... we're looking more at maintenance. Chemo every two weeks for the rest of forever. Chemo until this treatment loses effectiveness akin to the Folfox... then, that's it, I guess.

So, we just keep praying for a miracle... keep praying that God will touch Joe and aid the chemicals... put the cancer into remission... Beyond that... we just keep plugging along... taking each day one day at a time... living to the fullest. Can't just give up... can't just quit... There are those who think that Joe should go ahead and go on disability, but I tell you, when Joe doesn't work anymore... when he CAN'T work anymore... it'll be just a matter of time... Joe has to be able to work. At the point he can't, that'll be the point he just shuts down. I know it's coming... I just hope it holds off for awhile... We need some good days for awhile... some degree of normalcy. (*"*)

Thursday, May 6, 2010

I'm sorry...

for not having updated sooner. I swear, my brain is MUSH!

We're out of the hospital! Actually have been for about a week and 1/2. Keep trying to find some degree of normalcy here, but I'm beginning to think that we're about as normal as we're going to get. We may get some good days... but we're going to have bad days too... and apparently it's going to get worse... not necessarily better... without an absolute miracle from God.

It took nearly 2 weeks, again, for them to get Joe's diarrhea under control. The PA kind of lays the blame at our door, for Joe getting so far out of control... I'm not beyond still being a little torqued at her... and him too, really... the Dr. that is, not Joe.

THEY do not get that we have no extra income. The 4 weeks that Joe missed work in April, we have gotten a lovely $198 and change check from short term disability. We're beyond behind on the ignorant home equity loan I let Joe talk me into (there's more to that, but I'll not go there... gets me super PO'd at Joe, and right now, I want to love him more, not less)... our property taxes... we've got vehicle taxes coming up. We DON'T have the freaking money to come running every time he has diarrhea. They NEED to work with US to get some things done up here in MC vs driving all the way down to downtown Chasn. when they want blood work done. Even WA is too far if we're home... tho it's just a click away when Joe's at work. You can't get them to understand that tho. Call in to the local branch of the hospital for lab work... we'll go in... they can fax or call the results back, and then the PA or Dr. can request whatever Joe needs doing done. She acts like THEY are the only ones who can administer fluids. BS! Sorry... I'm just stressed.

Adding to the financial stress... Ever since our financial "issue" with the oncologist's office last Fall, I've been kind of knowing that things with Joe's prognosis was "iffy". The head chemo nurse had made a comment to me about the stress of all we were going through with their financial office being a lot when we were having to deal with the fact that the every two week chemo was going to be it for the rest of Joe's life. I really didn't question her... or say anything to Joe. Joe's fighting for his life. He's come close to wanting to hang it all up more than a couple of times. If there is ANY chance at all of him clearing the cancer, going into remission... I don't want to take away from his hope of a full recovery.

A couple of times just the first of the year, with the new treatment and all the diarrhea stuff, the doctor has written in his notes that Joe's had to have for his employer and whatnot, about the cancer being incurable... about the situation getting worse, no prognosis for better... Joe has always "explained" it away saying that, of course, the cancer at Stage IV is never considered cured... he can go into remission, but he'll always be considered as having Stage IV colon cancer.

Well, yesterday, he asked the PA about the Drs. remarks... Basically, she said that this is it. Chemo for the rest of forever. Of course, there is the "hope" that the chemo could finally kick cancer butt... but, for the most part, since it didn't during the first year and a few months... and the first round of drugs stopped working... Joe is either still not grasping what she said, or is, for his own sake, and maybe for mine too, glossing over it... STILL thinking that the new chemo is going to get his markers down... bring him into remission. I mean, I'm sure THEY hope so too, but I don't think they're counting on it. For the moment, I really don't want Joe's bubble busted. As long as he thinks he is going to get better... Attitude is a large part of dealing with any illness. As long as he's positive... he's going to have the drive to keep going. As long as he keeps going, I can keep going. Or I'm sure as shootin' gonna' try.

I can't say that I'm not torn up inside... since I pretty much "get" what they're saying. This is a whole lot different from when Les was sick. With Les, we were hopeful up to the last hour. Not to say I'm not hopeful with Joe. I believe and trust with my whole heart that if it's God's will that Joe be healed... Joe WILL be healed. It can happen. It's happened with others. And I don't know God's mind... so I don't know why Joe... why we... are being left to struggle so with all of this. I sometimes think, "If you're going to take him... just TAKE him!" We've come so close to losing him this year. 3 times. I don't think anybody but Joe and I, and the dr. and hospital staff, really realize just how close he was...

I think the scariest part of that for me is... with Les, I had tons of support. The online support group I was a part of... family... our church here... a few close friends... Right now, I'm feeling really alone. I guess I SHOULD try to find some sort of support group... but then again... I don't want the cancer overshadowing the rest of our lives. I don't WANT our whole life to be about cancer. I want our life to be about life! Family? My mom is so freaked out about money, she won't visit us, my poor older brother... "can't afford the gas". Hell, we can't afford the gas either, or any extra, but we have gone to see Mark (he was feeling alone enough before, with his STB ex-wife's stunts... but other stuff has come up... and now he's feeling really friendless... my younger brother is even bailing on him...)... we make it a point to make it to all the family get togethers that we can... She and Dad have two incomes with both their SS checks... They still have some in savings... We're sucking hind tit here, and SHE acts like THEY are floundering... I barely hear from her or Dad unless something is coming up. Like Mother's Day... dinner at their house... That's fine, but... The whole time Joe was in the hospital, she and Dad came once (gas)... called just a couple of times. My sister didn't even KNOW we were in the hospital until we'd been there a week... She was planning on coming down to steal me away the day we were released. I actually rarely ever hear from her... I realize she's got stuff with Loch... her and Jason have their couples small group... she has her women's small group... they have their friends... My brother, Matt, and his wife... Stef works a couple buildings over from the hospital. The whole time we were there, nary a phone call. She goes with her work friends to lunch all the time... sometimes right there in the hospital cafeteria. No effort made to come visit. Of course, Mom may have not told them either, as she hadn't told Sandra (who she sees and talks to daily)... but still. Mark IS about the only one we see or talk to at all... and that's generally just when he's really bored or lonely.

I'd say, it's a good thing you can pick your friends, but there again... The two next door... our Friendly Neighbors... I can't fault Gary... he's a hard worker, and he would do just about anything for Joe. "Brothers from another mother", they call themselves. And Patty... she DOES have a good heart. She just doesn't have a fully functional brain all the time. I've made myself step away from her a time or two. Everything is about her... always about her. Our financial problems are due in part largely to circumstances beyond our control... work and health related. They're having money problems too... the steel mill is slow, so his checks haven't been great. It was the same last year, but the whole of last year, they were traveling... going on vacation here, there, and yonder... And she is a shopaholic. Kohls... magazines, off the TV... her house looks like a... bomb went off. She's a hoarder. She's got more clothes than she can possibly ever wear. More stuff... stuffed in boxes, closets, under the beds. I doubt if she even knows half of what she's got and where. She keeps her life just as cluttered... constant drama... Two boys who like to use her... one she gets PO'd at, and the favorite one, she finds excuses for... She and her ex have been divorced and she's been remarried just about 20 years. She STILL hates him... still blames him for troubles in her life. Her now husband bends over backwards for her... doing stuff to try to keep her happy (last time he didn't devote himself to her, she left him and had an affair with a druggie... then when that didn't work, came back to Gary... and I'm afraid, given half a chance, she'd do it again...). She's just flighty. No real commitment to anything, or anybody, but her grandkids. I can't ever count on her to truly be there for me, 'cause she is everywhere else.

I do have one good, dependable friend... but her life is upside down right now too, due to cancer. Breast cancer... remission... Just had her reconstruction done, and it's not good. She's 5 weeks out...? Having all sorts of complications... My heart just goes out to her. I can't do much for her tho, as she's nearly an hour away... and I don't have the gas money to be able to go visit... sit with her... take her out for errands or appointments... She is having a lot to deal with, and now worried over Joe too... She does have other friends, at least, close by... her husband is a turd and her daughter is entitled and self-serving... lives at home but doesn't lift a finger to help.

I think... just one day... I'd like to step out of my life for a minute... be somebody else, somewhere else... But then again... I'm where God put me... all of this has to have a purpose... so I'll just keep on keeping on... Praying... always praying... (*"*)