Tuesday, January 26, 2010


Yesterday we were VERY excited to be moved back down to the 5th floor... Moving down was a move up toward getting out of here. Joe's platelets and hemoglobin are still steady, or were at last check... (yep... she just came in and said last CBC she took a bit ago is still holding, so no more bleeding)

He was so excited to be able to eat again yesterday after no food since the tiny bit of toast at home Saturday morning, and a couple of Jellos Saturday night. They gave him some ice cream, Jello, and crackers. His stomach was a bit sore before... but they had said all the platelets they gave him, and the blood... the antibiotics... could make him a bit icky. It's kind of continued to be sore...

Last night, he wasn't real hungry. That was fine... Mom and Dad had come down to visit for a bit... brought me some chili... He nibbled on some rice and mac and cheese.

Early this AM, he got a little queasy... he's thrown up some stomach bile a couple of times. The shunt doesn't seem to be draining the fluid, but his hole from the parencentesis was still open and oozing until last night. The nurses had tried to tape it off, but it was still leaking out... I got him to roll on his opposite side to take the pressure off the hole (otherwise, every time you wiped it dry, it would just ooze back out again), and got it closed off, finally. Dr. W... the surgeon, said that MAY have actually been keeping the shunt from doing it's job. It's based on high pressure/low pressure, and since the hole was there (VERY tiny hole, but a hole nonetheless), it may have kept the pump from pulling. We're gonna' see! I think Dr. W is going to order up some more Lasix... just to help things along as far as getting the fluid out of his tummy.

Dr. W and Gloria, our oncologist's PA, have both been in. They had called the GI doc, and he had ordered an xray, but Dr. W has upgraded it to a CT. Don't know when they're going to take him down... but I just had to pause for a moment... we were going to change his sheets while he was gone, and give him a bath when he got back, but since it may be later, and due to the fact that he just urped and accidentally poured it from the pan down his gown and into the bed... the PCA (? that's what the white board says) changed his bedding while I washed him up.

Without doom and gloom, I think that they're concerned with why he's kind of going South. He was good when we went home Friday... Even after being down here Saturday and the ICU overnight Sunday, yesterday, he was looking really pert and perky. He was pretty good while Mom and Dad were here... just this throwing up thing now... and he's back to the being kind of lethargic. Washing his poor battered bod... he looks like he's just wasting away... everything is skin and bones but that belly. He's had A belly since I've known him, but he was always really built. BIG muscular arms... BIG muscular legs (or as Daniel had put it one time, legs like F'in GI Joe)... 'Bout broke my heart. Like washing up my Papaw after had his heart surgery.

Here I was so thrilled last night... thinking he was doing so much better... THRILLED that our night nurse snagged me a twin size cot to sleep on, so I could ditch the recliner chair. I guess THAT is still good. Looks like we're going to be here awhile longer... so important that I get good rest so I can be able to take care of him. And with all else going on early this AM, we did both get a better night's rest last night. He was up and down a bit, but we were both still snoozing up until around 7:30-8 this AM... that's nearly unheard of.

Keep praying... we're not quite out of the woods yet...

I talked to one of Joe's co-workers just a bit ago... His CPS boss donated 3 days of time for Joe, so he's covered now, for Thursday, Friday, and yesterday... and Connie said she's going to ask the "big dogs" about if there is anything in the PTO pool... that was supposed to have been set up after Joe's hospital stint after his inital cancer surgery. She said for us to not worry about Joe's paycheck for this week. They WILL get it covered. Tony, our friend and one of Joe's Boeing bosses, told me the same thing Sunday night. Joe and I are not to worry about his job, or about a paycheck. It's almost too much to hope for, but we'll see.

So, keep the prayers and good thoughts coming... we're still working our way out of the woods here. Thanks! Susan

Monday, January 25, 2010

Things are looking better this morning...

I think. :)

Last night I stayed in a room down on the cancer ward. One of the nurses called down and arranged it for me. They know we're roughly an hour from home here... and didn't want me just "hanging out" last night.

They have two rooms down there off the "Atrium" for families of cancer patients that are far from home. It was a little... weird... You're kind of isolated... away from the actual rooms and other populated areas. No attached bath, so I got all my "stuff" done before I was ready to "check in". They used to give you a key, but now one of the nurses has to let you in with a swipe card. I didn't want to have to keep getting them, so I got a couple of towels and some wash cloths from the ICU nurses and went in one of the bathrooms up here and washed up... went down and got a nurse to let me in. She very kindly gave me a comb (I'd forgotten my hairbrush, so was finger fluffed yesterday), and a cup of ice water, and then I locked myself in for the night. I was so tired, it didn't take long to fall asleep. And then Josh called. The weather was a little rough last night, and he was all by himself in the house. I think he was just slightly freaked out. I could stay on the phone and chat tho. I really was just running on coffee and chocolate yesterday. My head hit the pillows and I was out like a light. Woke up a short bit around our regular wake-up time, but quickly fell back asleep until the alarm went off around 5:15.

I didn't have to "check out" until 10, but there was a 6-7 visitation this morning, and I wanted to check on Joe. He was still a little out of it when I left at 9 last night... and they were still giving him blood. I just wanted to get up here and eyeball him.

He was awake when I went in... God bless his dear little heart... they're still not letting him have anything to eat or drink as they want to be sure he's over the bleeding and all before they let him put anything on his stomach, in case they have to check him out again. The nurses have felt bad for him tho, and have been allowing him some ice chips. The new chemo really dehydrates him. His lips are all dry and chapped, and then having had the vent Thursday, his throat has been really irritated. I don't know why I hadn't thought of it before, but just as soon as the gift shop opens, I'm going down to get him some gum. It'll "freshen" his mouth and help produce some saliva to keep his mouth more moisturized. It'll maybe give him the comfort of chewing too. I asked the nurse to be sure, and she said that would be fine. He just can't eat it.

Our surgeon, Dr. W, is supposed to be coming in to eyeball Joe... and I'm sure Dr. G will come through again, and the GI doc... His hemoglobin was good earlier, and the nurse was just getting ready to do another CBC when I was leaving. God willing, this has all settled and if they don't have to give him more blood and all, and watch him so closely, maybe... juuust maybe... they'll put us back in a room on 5 tonight. I'm going to have to do something, myself, about a shower... wash my hair... If they'd have had a key for that room last night that I could have come and gone without bothering the nurses, they have a shower right there by the room where I stayed. I just didn't want to have to go out and leave my door open with my computer and other stuff in there. If we get in a room again, Joe and I both may be able to get really cleaned up. Poor baby... he's not had a shower since Wednesday night. I KNOW he feels gookie... Don't have to worry over his hair much. Chemo's pretty well taken care of that again. Anyway, I told Joe if he has any concerns over not remembering what "Hank" said, to tell him I'm either here in the waiting room, or he can call me on my cell and I'll come up, if I'm downstairs. Haven't heard or seen anything yet so... I TRULY don't think they'd kick me out if I'd have stayed in there... If I'm with him, they don't have as much to do. I just don't want to not know what's going on.

All that said... I really DO feel better today about where we're at right now. Last night, with the blood still coming and all, I was still a little freaked out. I just layed it all in God's hands last night. All I can do with all of this. I had to call Joe's "boss"... our friend Tony... last night and tell him Joe wouldn't be in again today... and most likely tomorrow... Tony said to not worry about it. He'll take care of things. He said he often tells Joe to go home and rest... I was just real honest with him. Joe doesn't work, Joe doesn't get paid, it doesn't matter how Joe feels. Maybe... just maybe... that'll put it to Tony that not only does Joe DESERVE to be working with Boeing (he agrees Joe is an awesome worker... gives above and beyond his "pay grade"), but he NEEDS to be on with a company that will give Joe better benefits during all of this... vacation days, sick days... more money to be able to live on when he's not able to work... Who knows? God can take and make good out of bad. He does it all the time.

I hate cancer... I hate that Joe has cancer... but honestly, Joe having cancer has wrought a change in him. No more drinking. That is a HUGE bonus, 'cause we were having issues with that. His whole outlook on a lot of things have changed. Facing your mortality can make a big difference in how you view different aspects of life. Our relationship is better in the long run. If we achieve our goal of beating the cancer back... who knows?

Okay... time to go buy some gum... and then it'll be time to go back in and check on Joe. See if the doc has been in... or Docs... I'll report back when I know more!

Tons of hugs and thank yous! Susan

Sunday, January 24, 2010


after a horrible night in a room with a toilet that would hardly flush (and that's not a good thing when you got a fella' going in every little bit with bloody diarrhea...), and a nurse that insisted on coming in, turning on the big overhead and talking her way through every procedure (it wasn't for my benefit, 'cause I had no idea what she was talking about half the time... people are SICK and trying to REST... be as unobtrusive as possible), we've been hauled off to the ICU. Oh joy. They were acting like Joe was having serious issues. At one point in the AM... the silly nurse read Joe's blood pressure low. Freaked all out and called the Immediate Response Team. Lady came in... Joe's blood pressure was fine... ??? Yeah, he's getting blood and platelets, antibiotics... but nothing is in excess. Every time he MOVED she was running in the room like we were having a disaster. Wanted him to call when he went to the bathroom. I was right there. He was fine. He's not real weak, not wobbly. I realize they're being overly cautious to take good care of Joe, but everytime they move him around, they get him all stirred up, and the diarrhea would start all over.

Okay... had a little break. Had to shut down for a bit while they did their tests on Joe... Upper GI showed a small stomach ulcer... nothing major. GI doc came out and asked for permission to go ahead and do a colonoscopy while Joe was out, and good that he did... that's where he found the bleeding issue. Said what they'd do for that is antibiotics... and they already are, so he's covered there. So... nothing too major major... but he'll still be in the ICU for tonight at least, so they can watch him... and then maybe... hopefully... if he does well, they can hook him up with some antibiotics he can take at home and we can bust out of this place tomorrow...??? Well, see. As much as I pretty much hate being here... I love Joe more. I may tho, go ahead home tonight... come back tomorrow. They appear to be pretty strict with their visiting hours, so I'm not going to get to stay here overlong... Go home and get some rest, since right now, I'm pretty much running on an hours nap last night. He'll be in good hands while I'm gone for the night... lots of pretty nurses. LOL! I'll see when he ever actually wakes up.

Saturday, January 23, 2010

Scratch that...

we only THOUGHT we were home... :(

Joe started having bloody diarrhea around 2 AM... was still going on by noon-ish, when I finally got him to let me call the doc(s). Dr. G, the oncologist, said to get him back down to the ER...

They're concerned about internal bleeding... either esophagal varacites... or stomach ulcers... something. Dr. G called the GI doc and his on-call came over... he's going to let them get all Joe's goodies in tonight (whole blood, platelets, antibiotics...) and then in the AM they'll take him down for an upper GI and see what they can see. The bleeding... old and new, in the diarrhea is pretty much stopped... so they may just have to treat for what was there, or what's there that the low platelets brought out. Going to be a long night...

I prepared this time... packed something to sleep in... other necessities... (tho I forgot my acid pills, my ibuprofen... and they won't give that stuff to those who aren't patients... and the gift shop was already closed by the time we got in a room and settled).

They've told us to prepare for a long night, so I'm getting ready to take my nighty-night pills... brush my teeth... get in my "jammies"... and then IF I can get them to bring me some bed stuff... Joe sleeps through everything. I know it's a lot because he feels like crap, but he's done that for forever. Me, on the other hand... Hoping I'll get SOME rest, but unlikely too much. The one light that works in here is a bright overhead. I'm going to have a horrible time come tomorrow.

Prayers appreciated.

Friday, January 22, 2010

Home again, home again, jiggity jig...

There IS no place like home.

Both of us had a restless night... Dr. W in around 9-ish... checked Joe over. He was pleased. Only issue was that Joe's platelets and white cell count were down. Not abnormal for in between chemo weeks. But Dr. W was concerned enough to call Dr. G over... They gave him some platelets and finally turned us lose after 1 o'clock.

Joe's napping on the couch... I'm fixing to join him. I'm beat.

Thursday, January 21, 2010

Just quick... I've only got a couple hours left on my battery...

and all the rest of the day and night, and ??? tomorrow before we get to head home. I KNEW I should have packed my power cord. Came in thinking we'd be going home today, but since Joe had ballooned back up, Doc W wants him to spend the rest of the day and night in here so they can fill him full of Lasix and hopefully get him to pee out what they didn't drain, so there's not sooo much to go back through his system. I DID pack my toothbrush, toothpaste, "female" items (why is it ALWAYS that time of the month EVERY time we have to come down here?!?!?)... an extra top, and panties... and of course, makeup...

Anyway, the port is in... the valve is in... Joe's going to be seriously bruised and sore... platelets were only 54,000... Doc said it went well tho... and he looked around... got some biopsies... We'll find out what they show next Wednesday at chemo, I reckon'... Going to shut down now and get back to my book... Reading "The Shack"...

Wednesday, January 20, 2010

New thing...

Guess it's due to the new chemo? Had a bandage over the leaking hole (from the parencentesis)... started coming loose... When Joe took it off, it took skin. Owie baby! I doctored him up, unconventionally... but it's working, and no tape.

Surgery for the port and valve are tomorrow. Hopefully Dr. West will have an alternative to sticky bandages and tape for the boo-boos... (*"*)

Monday, January 18, 2010

Don't worry, he says...

How do you not worry? Joe just had 7 liters drained off his abdomen Friday. He's as full tonight as he was when he went in Friday morning. He had me look up acites... I'm not liking what I saw. Of course... if the new chemo works.

All of this... I lost it today. Completely. Raged against God. Raged against Satan. God won. I think I'm back in focus again. I can't be completely joyful... and I can't completely give thanks for this cancer... but I'm determined to work on how I'm looking at things... how I react. It's not going to be easy, but I have to keep reminding myself that I am not in this alone... no matter how much it feels like it at times. My friends are few and far between, but there are there. Mostly, the best friend anyone can as for is at my side always... God. He will never leave me nor forsake me. I can't ask for more. (*"*)