Monday, July 28, 2008

Follow-up Visit

Hey everyone (or anyone, as I don't know if anyone's continuing to read anymore, as I'm not posting regularly!).

Greg went for a follow-up visit to St. Louis on Friday. We had to get up at 4, as the only appointment available was at 9:30 (and he has to have labs drawn and analyzed before meeting with the doctor). Anyway, things are looking good. All of his blood levels have gone up, altho they still are below normal levels. However, his white count, red count, platelets, and ANC haven't been within "normal" ranges for years. The doctor is very pleased with his progress.

He said the fatigue is normal, and could last a good while. As far as work is concerned, Greg is going to try to go back full time next week, and see how it goes. If he has to, he'll cut back to half days, depending on how he feels.

We go back on September 26. Then they'll do a biopsy and skeletal survey (whole body X-ray to check for tumors) to make sure this all worked the way it was supposed to. We don't get those results until about 10 days after. Of course, that appt is at 9:30 a.m. as well. However, I think I finally have Greg talked into going up the night before.

I'll post again if I have any news, but that's about all for now!

Thanks for the continued support!

Love,

Ann

Friday, July 11, 2008

Time Off for Good Behavior

HOME!



Went to see Dr. Vij (the regular oncologist) this morning. He looked at us & said, "Were you planning on heading home today?" Greg said, "I don't know, I thought you were driving this bus." He said Greg looks great, both in person (but we already knew that) & on paper. His labs look good, altho everything is still a little low but that's to be expected. We're at the treatment center now awaiting platelets & then we're DONE. He'll have labs drawn next week in Springfield to make sure he doesn't need anything, & then we come back here for an appointment in two weeks. He'll need plateletsupport for a while yet, plus may need other stuff from time to time. But, it'll all be outpatient & he'll be home. He'll still need plenty of rest & recovery time before he's ready to show up at training camp to vie for Brett's position.



We decided to tempt fate last night and got a good start on our packing, so once we get out of here, it won't take us long to get on the road. However, it could be a bit of a wait for the blood bank to send up the platelets, as sometimes they don't have any and have to "send out" for them. We hope to be home in our own bed (!) by 8 or 9 tonight.



We called the boys to tell them & although Matthew says he'll be happy to see us, his first response to the news was, "But, we're going to Nakato tonight!" I assured him he'll still get to go, & all was right with the world. He must be having a good time with the Altoonians, though, as evidenced by that response.



I don't know if this is The End of the Blog, but I won't be posting daily anymore. Thanks once again to everyone for reading this, supporting us & helping us get through this with so little difficulty. I know I'm going to forget someone, but I'll take a stab at naming a few: Eric, for your brotherly love; Matthew, for being a "good boy" while we were gone (he says he was!); Grandma Sadie, Uncle Tom, Auntie Skibby & the whole Altoonian family for taking such great care of the boys; Francis & Cindy, Judy, Debbie, Tammy, Ian, Kim, Emily & all the other regular & semi-regular posters who helped us keep our sense of humor; Mark, for visiting & keeping Greg company for a weekend; Deb & Skibby (again) for the medical advice & support; everyone at my office for covering for me while I was gone; and to all the silent readers who may not have posted, but whose prayers, love & support mean so much to us. I know I've probably forgotten someone, but believe me, its not intentional. We couldn't have gotten through this without all of you!



Thanks to all!



Love,


Greg & Ann

Thursday, July 10, 2008

Amost Home!

Sorry for not posting a second time yesterday. We got the word at about 10:00 that Greg's parole had come through. We immediately began to pack everything up (including the computer), which took all of 20 minutes (its a really small room). Then, we sat there staring at the white walls being ignored until well after 2:00, when someone decided maybe they should come & begin the discharge process. So, about 3:30, he finally got sprung! Yea!

Can't tell you how good he feels, knowing the end to this long process is almost over! Considering where we were about 6 weeks ago, this truly is miraculous. He goes to clinic today for lab work & a growth factor shot & tomorrow we see his regular oncologist. Hold onto your hats folks, but there's a decent chance that he'll get to go Home home tomorrow! The conservative doctor with the small thumbs said probably not until Tuesday, but the nurse (the nurse's know more than the docs) told us on the sly that she thinks it'll be Friday. My money is on the nurse. Even if it is next Tuesday, that's still a few days ahead of schedule.

Greg is going to have to get used to not being in the hospital, though. Last night, in the middle of the night, he was half awake/half asleep. He woke me up, saying he needed help with his IV pole to go to the bathroom. He thought he was still hooked up. Being the sensitive, loving spouse that I am, I said, "Huh?" & rolled over & went back to sleep.

While its great having Greg out of the hospital, it'll be 100 times better to be Home, in our own house, with the boys. We really miss them. But, they seem to be having a great time with the Altoonians, though I feel sorry for Julie -- living with 5 men in the house. The testosterone levels must be approaching lethal.

I promise to blog tomorrow, even if we are rushing to get out of town (hopefully!)

In the meantime, a HUGE thanks to all for the comments, prayers, support & love. I know I've said it before, but we really couldn't get through all of this without our loving family & friends. We can't thank you enough.

Love,

US

Wednesday, July 9, 2008

16 Crummy Points

Our Hero's ANC is at 1484 -- a mere 16 points from the magic number (Greg did the math for me). But, more importantly, we are stuck in the middle of that (in)famous Jimmy Buffet tune: "Lassix All Day, Saline All Night."

"Get Me The Hell Out of Here!"

No sooner had I posted yesterday than the oncologist came in & said there's a chance they'll send him home today (Wednesday). We seem to have two competing docs here -- one who's very conservative, the other a little more moderate. The conservative one doesn't seem to want to let him leave, while the moderate one does. Rumor has it they're going to rumble in the doctor's lounge later today & come to a decision. Maybe it'll be a thumb war. I'm rooting for the oncologist -- he seems more willing to send him home (and, he has bigger thumbs).

So, once again we're in hurry up & wait mode. What else is new? We're getting very good at that.

I'll post again later today if anyone (including Brett Favre) comes to a decision.

Stay tuned!

US

Tuesday, July 8, 2008

Coming along -- slowly

Reader's Digest Version: Hooked up to IV for 8 hours overnight. Got electrolytes, antibiotics, anti-fungals & plateletes, all with 8 hours of fluids -- ankles still swollen. While the rest of the world has one big toe on each foot, Greg has five that all look like Cuban cigars. I never thought getting his feet into his shoes would be an issue. Central line came out this a.m., & reportedly the doc says discharge (maybe) Thursday (to St. L). Fever overnight.

That's the short version. Seems we won't be coming home this weekend as we were thinking over the past weekend. We haven't seen any docs this morning because they had to take Greg down to Interventive Radiology to remove the central line catheter. But, its good that its out because thats a possible source of infection, and could be contributing to the fevers. He has to be fever free for 24 hours before discharge, too. Last night his ANC was 1354 (remember, 1500 is the goal), but they've also been giving him growth factor shots for the last week, which helps to increase that count. Tomorrow, they'll probably discontinue the growth factor to see if he can make any white cells on his own. So, the Thursday discharge date is still a maybe. It depends (which has become our mantra).

So, we're just hanging out. Like Greg says, "Everybody's got to be somewhere!" He's been feeling pretty good the last few days, so we know he's turned the corner. Thanks to all for the great comments. All the prayers are definitely paying off, too. We really appreciate all of your support and friendship. Thanks to all!

Love,

Greg & Ann

Monday, July 7, 2008

Definitely Maybe Kinda Sorta, We Think

The ANC continues to go up & up! When we last left Our Hero, it was Independence Day & his ANC was up from zero to 52 (1500 is the goal). On 7/5 it was 192, and last night it was 585. He feels TONS better, and slowly but surely, the water is coming off. Part of the problem with the fluids is that when they give him Lassix to take fluid off, it also takes off electrolytes. So, in order to replace the electrolytes, they have to give him more fluid. Its a vicious cycle.



As of late yesterday, he was still running low-grade fever, but that broke last night & his body temp is finally feeling normal. He's no longer sitting in bed or the chair bundled up like its December & the furnace isn't working. Lets hope that holds.



So, what does all this mean? Good question. Yesterday, the floor oncologist came in & said, "You're looking pretty good. Tomorrow we'll take out your central line & get you out of here possibly by Tuesday." Needless to say, we were filled with guarded enthusiasm. This morning, the nurse comes in & asks why he's getting his line out. Greg tells her what the oncologist said & she's VERY surprised. The resident comes in & tells us that order was for someone else (you mean they wrote someone else's order in his chart? yeah, right). Anyway, he says the line ISN'T coming out today & there's no timeline for discharge. Then, he comes back in 2 hours later & says the line IS coming out sometime today. We just don't know when. And, he gives a tentative discharge date of Wednesday. That doesn't mean he gets to come home to Nixa, but we both get to stay at the summer house for about a week. They'll set him up with an appointment with our regular oncologist after discharge, and then he'll likely get to go home home after that. Just don't exactly know when that will be -- could be Friday, could be sometime next week. An hour later, the oncologist comes back & says the line comes out today or tomorrow, & discharge is tentative for Wednesday or Thursday. Sigh. I think I knew more when I didn't know anything.



So, that's as definitely maybe as I can be. In other words, we don't know anything (so, what else is new?). I'll keep posting as they keep changing their minds. Remember, nothing around here ever is definite. (Its now 1:30 -- I've revised this thing 3 times since I started writing it this morning!)



All in all, though, spirits are up, fluid retention is down & Our Hero is getting restless. That's a good sign. When he was feeling crappy (pun intended), he was really compliant. Too scary! He's getting just a little bit little ornery again, which makes me feel all is right with the world.



Thanks to all!

Love.

Us

Saturday, July 5, 2008

We have ANC!

As of yesterday evening, Greg has an ANC count! We haven't had one for about 4 days, so this is very exciting. This means his white blood cells are coming back. The ANC measures the infection fighting white cells. Its supposed to be 1500. His is 54. But, its a start! Going in the right direction!

Unfortunately, last night was the most "interesting" night yet, from a medication perspective. Because of his lab counts being so low, Greg needed 2 antibiotics, an anti-fungal (see I TOLD you fungus was bad!), 3 different types of electrolytes & 2 transfusions. All b/c he had a fever (and the complications associated with that--mainly dehydration). But they couldn't give him any of that until he got his fever down with Tylenol, which took forever. So, at 10 p.m. his fever is down to 100.3 (the cutoff) & they finally started hanging stuff off his IV pole. As with all meds they have to give them in or with large bags of saline solution to "keep him hydrated" (its an obsession around here). By 4 a.m. the overloaded IV pump alarm went off for the 12th time -- don't worry though, it only rings for about 15 minutes before the nurse shows up to turn it off. (At one point they had an emergency in another room & it took an hour & 15 minutes before someone was able to come turn it off). At the crack of dawn, the nursing tech came in to check his fever. Lo & behold he has one again! No only that, but he looks & feels like the Sta-Puft Marshmallow man due to all the fluids. He needs to get "pissed off" -- & he is. The doctor comes in, just after breakfast & says, "Do you realize you have a fever? You need MORE anti-biotics." I think Greg's head started to spin. So, while the Lassix is emptying him out, the antibiotics & saline are filling him up faster than the Lassix can work. His entire body is bloated & he's up about 10 pounds. (George: I think he's going to win the contest again! I wish you were here to share the moment with me!).

As uncomfortable as all this is, he's not in any danger medically & is slowly getting better. All the cultures have come back negative. And, he's getting a little grumpy, so I know he must be feeling better than he did earlier this week.

Thanks for the comments. Debbie, I was thinking about mojitos last night. I'm jealous. I'm not sure, but I think I saw some mint leaves floating around in one of Greg's IV bags last night. I think he's getting some on the sly. Em -- glad you enjoyed the brats & thanks for thinking of us! George: Go Cards! (If I didn't write that, they would kick Greg out of here -- these people are Cardinal crazy around here!)

Judy & Mark are here with the girls. We plan to go to Grant's Farm today & I'm taking them to Cunetto's for pasta tonight, then to Ted Drew's for dessert. The boys are on their way to the Altoonians for the week, and Tom & Sadie are headed home, but plan a stop here on their way through town.

Thanks to all!

Love,

Ann & Greg

Friday, July 4, 2008

Independence Day

Happy 4th of July to you all!

What the heck are you doing inside surfing the web? You should be outside having fun!

Greg's symptoms continue to improve. His fever outbreaks seem to be getting less frequent and less intense. The "Revenge" is significantly better, and his mouth sores are improving. They continue to push fluids, but he still can't get his mouth to feel hydrated. But, daily we see incremental improvement. I can tell he's feeling better, as he's getting a little antsy. His appetite is poor, but he's had a little soup, crackers & bread over the last few days. He's really tired of drinking water, so I keep trying to find other things for him to drink. He ordered the diet lemonade today for lunch & it was like Will Smith in Men in Black when he went to "Edgar's" house -- I don't think they put any sweetener in it at all! He's now got a permanent pucker!

His white count continues to be zero, as well as his ANC (infection fighting cells), but that's still normal. The doc says he probably won't begin to see those come up until early next week.

So, we continue to hang out. Judy, Mark and the girls are on the way & we hope to see some fireworks out our window tonight. There's a big show planned from the Arch tonight. Unfortunately, we're facing north, so we may not have enough of an eastern angle to see.

On the cell phone front, I appear to have service again. I took out the battery & put it back in & Viola! It works (Sorry Amanda!). We'll see how long it lasts. If you try me & can't reach me, try Greg's. If he's awake, he'll answer.

Thanks to all for love, prayers, support & everything. Love the comments. David: Can't think of anything specific to ask for other than that the blood counts to come up soon. Mich: as soon as you get pregnant, I'll crochet you a pony too. Oh, and neither one of us believes the story about Brett coming back. We own a share of the Packers, which makes us owners of the team, and they haven't told US anything -- you'd think if there were any truth to it, we'd be the first to know!

Have a safe & happy 4th everyone!

Love,

Us

Wednesday, July 2, 2008

Improvement

Hi to all. Thanks for the comments. Cindy H: I can't crochet baby Roscoe a sweater, so I'm going to crochet him a pony. Top that! Francis: loved the story. Deb: That's exactly what they've been telling me here.

They draw a blood culture every 24 hours & so far all have been negative. He hit a high of 103 yesterday afternoon & spent the day sleeping. He was feeling pretty misterable. But, at about at 8 p.m. he felt tremendously better. He got up for about 2 hours, and ate for the first time in about 24 hours. His BP got down to 90-something over 40 something at one point, so they've really been pushing the fluids, orally and IV. The "Revenge" keeps rearing its ugly head, but now that its been confirmed that he doesn't have "c-diff" he can have Immodium, which helps.

I stayed the night again last night. His counts remain low, and they probably won't start coming back up until early next week -- so he'll probably feel like this throughout the whole weekend. Last night he got 2 units of whole blood, and they hung 3 IV antibiotics. Needless to say, another sleep-deprived night.

The staff here seems to be on weekend mode, so we just saw the doctor (9:30 a.m Thursday). He's still stumped on the rash thing, & still assures us the rest is all normal. (Easy for him to say.)


On another note, those of you who have been trying to reach me on my cell may have figured out that its been acting possessed all week. Sometimes it rings, somtimes it doesn't, with no rhyme or reason. Well, it appears last night it finally decided to quit alltogether. I can't even seem to turn it on. So, those of you who need me, call on Greg's phone. If I can't get it to work again soon, I guess I'll be ordering a new one: "You may find this strange, but I just want a phone that makes phone calls!" That may be the biggest challenge I face this week.

Other than that, we're just hanging in there. Looking forward to Judy, Mark & the girls coming to visit this weekend. They should have a blast playing with the controls on the bed. Matthew sure did last weekend.

Love to all!

Us

Rough Night -- But OK

Well, we had a rough night last night, but, according to everyone here who's in the know, this is nothing out of the ordinary.

Greg continued with the "Revenge" during the day and starting last night, got a neutropenic fever. Evidently, this is par for the course. He spiked about 2 a.m. with 102.something. Lots of chills, and tylenol was only marginally helpful. We piled on the blankets & they also started him on IV antibiotics. The good news is that, as of this a.m., the 'revenge' seems to have abated. Last night about 8 p.m. they brought in a portable x-ray machine and took a chest x-ray, just to be sure his lungs are clear (they are -- the x-ray was negative). He's also developed some sort of weird rash all over which seems to have the doctor stumped -- they don't think its a medication reaction because it came on before the antibiotics. He's lost so much fluid over the last 24 hours that his blood pressure is very low, too, so they've got him on IV fluids & he's drinking a lot of water. I stayed here at the hospital last night to help out so I'm operating on very little sleep. I'm going to to home soon to shower & pack a bag so I can stay again tonight.

We have been assured by everyone that this is SOP and its not time to panic. I have to admit, when they came for the x-ray last night I had a bit of a flashback to August of '03, but the nurse assured me this is all normal.

Basically, what's happening is that his white count is so low (altho he's stubborn -- its not quite zero yet), that his body thinks its got an infection, so that's where the fever comes from. The antibiotics are precautionary.

So, even though his energy is VERY low, our spirits are still good. We really enjoy all the comments, and I make sure to read them to him every day. Deb -- thanks in advance for the shower shields. I hope they're waiting for me when I go home to clean up.

Thanks to all!

Love,

Us

Tuesday, July 1, 2008

D....Day

Well, something is finally happening. Nothing too serious, but our Patient is feeling some of the side effects that everyone here kept warning him were coming. He had a bit of a rough night -- up a lot with the chemo version of Montezuma's Revenge (maybe it was power of suggestion after watching the "dung" show last night!). He also spiked a slight fever, has a few mouth sores and is feeling a little dehydrated. But, all in all, he's still functioning OK, and everyone here who's in the know assures us this is all normal. He's just really tired and uncomfortable. The narrow hospital bed has been really difficult to adjust to. He will probably (hopefully) cat nap throughout the day, hopefully with minimal interruptions. I'm going to try to run some much-needed errands later. Right now we're watching Wimbleton. That should put him to sleep!

Thanks for the great comments. Kathy J., it was great to hear from you. Keep the prayers coming & hopefully our Patient will feel better soon! Thanks to all.

Love,

Us