Sunday, May 31, 2009

And On Sunday, He Rested

Sorry there was no post yesterday. Matthew was here with Skibby and Grandma, and ran me ragged. He and I went to the Magic House, while Sadie and Skibby visited with Greg. Greg was feeling much better and they had a nice visit.

The previous night neither Greg nor I got any sleep, though. He needed blood, platelets, phosphorous, potassium, and antibiotics. All between the hours of 10 p.m. and 7 a.m. Plus, he had some major issues with the "Revenge." The night nurse came in and gave him Lassex at 10 p.m. (She’d been here since 6:30, but somehow didn’t get around to it until then). Then, she turns right around and pushes something through his IV. We asked, and she said, "Oh, that’s your Benadryl." (Pre-med for whole blood). Benadryl completely knocks him out, especially when given IV. Interesting way to start the evening. It was a loooooong night.

On the heart front, Greg’s heart rate is MUCH better. Last night his pulse was 83! The new drug is called Coreg, for those of you who are interested in those things. O’Maher’s stint ended yesterday, so unfortunately, unless she follows up on her own, she won’t ever know how perfectly right she was. Today, the new fellow came in to start his 2-week rotation. He’s very happy about this heart rate thing, and said the dose Greg is on is really a "baby dose." He wants to up it. The reason is, this drug can actually repair the damage done by 3+ months of congestive heart failure. That’s good news. Plus, this guy’s background is in cardiology. We were under the impression that the damage was irreversible. Oh, and there was no sign of DP last night. Maybe he was too embarrassed to stop in?

Yesterday Greg got his last dose of chemo, and his first dose of Tacrolimus, an anti-rejection drug. It’s a 20 hour IV infusion. Its so potent that it cannot be mixed with anything else, so instead of regular clear IV tubing, it uses an opaque, light blue tube. Matthew’s first question was, "Why are they giving you Gatorade dad?" That’s what it looked like.

Today is a day of "rest," with no chemo, but another 20 hour dose of the anti-rejection drug. That’s set to start at 2:30. But, he was completely unleashed for a few hours today, and before our company left, we masked Greg up & went down to sit in the enclosed courtyard for about half an hour. I think Greg enjoyed the breeze and change of scene, but its really hard to breathe through the mask.

His counts are starting to drop, but won’t bottom out completely for another week or so. Its weird that they can give him his cells while he still has counts, but they explained that these are cells that are still running around his bloodstream, even though his marrow is now completely wiped out. The counts drop because he’s not making any new ones.

So, tomorrow is the big day (Day Zero in transplant-speak). There’s a little confusion over what time to expect the transplant. Seems "MUD" (Matched, Unrelated Donor) cells aren’t usually frozen. They’re flown in "fresh" so to speak. However, the nurse thinks, (but is not sure) that his actually are frozen, and no one seems to know if that’s true and if so, why. She promised to check. With MUD transplants (that just doesn’t sound right, does it?), you get them when they arrive. Remember, his are coming from somewhere in Europe, so it could be 2 in the morning. Hopefully, we’ll find something out soon, but the lab, where they know the answers to these things, is closed on Sundays.

But, we had a great visit this weekend, although exhausting. They’ve put an addition onto the Magic House, for those of you who haven’t been there for a while. Matthew and I climbed and walked and went through obstacle courses. We spent about 4 hours there, closed the place down, then went to Ted Drew’s for dinner. (Missouri people: think Andy’s. Wisconsin people: think Leon’s or Kiltie. Hey, ice cream has calcium in it!). We were bushed. This morning, I went over to the hotel to go swimming with him. They just took off about an hour ago, and we’re trying to catch a nap before the afternoon/evening rush. I’m betting Matthew was asleep before they got onto I-44.

Greg says Hi to everyone and thanks to all for the comments. They keep us going! Thanks for the prayers & finger-crossing. If you have time, take a moment to send us some good Karma tomorrow.

Love,

Greg & Ann

Friday, May 29, 2009

His Cheatin' Heart

Ok, this may be a little "stream of consciousness" today, as I’m feeling a little scattered, but here goes:

The Fellow, Dr. O’Maher (I thought she was a resident, but she’s a Fellow – higher rank than a resident), still concerned over this heart rate issue, ordered an echo cardiogram, which they did yesterday afternoon right here in the room.
Last night DP comes barreling in, after dark, as usual. He declares that the whole heart thing is due to "his illness" and therefore, nothing is to be done. He leads us to believe that all we need to do is the transplant, and everything will be hunky-dory. (Don’t get too excited – its BS). As far as he’s concerned, end of story. I ask him what the echo cardiogram found. Turns out he hasn’t read it. I’m a little surprised that he can come to any conclusion without reading the test, but he’s sure. Before we knew it, he was gone, hollering over his shoulder as he exits the room "I’m here if you need me." Yeah, right.

Greg and I aren’t buying it. So, this morning, O’Maher comes in. She’s concerned about the heart thing – thank God somebody is. She’s actually read the test results (why didn’t I think of that?) which shows his input/output ratio is slightly less than what it should be, making his heart work harder and lowering the efficiency, all the while enlarging his heart. The disease, the fevers and the chemo are all contributing factors. Not just the chemo he’s getting now, but all the chemo over all these years. Every time they do something for you they do something to you. She very politically tried to tell us that she’s not comfortable doing nothing, but is not sure what to do. Plus DP, as the attending, is running the show. She is going to "think about it" (I think that means code for argue with DP) and get back to us. We looked through the medical records we brought with us and found the cardiac reports from our little excursion into Overland Park (see March entries). Maybe, in hindsight, his stay there was a good idea. Anyway, those reports showed everything was fine with his ticker. So, this has developed recently. We gave the reports to O’Maher. We’re still waiting to hear back.

The problem is that the Fellows only do a 1 to 2 week rotation. Our nurse wasn’t sure if this is the end of her stint or not, but is trying to find out for us. The good news may be that it could be near the end of DP’s rotation, too. Dr. Vij is out of town until the week after next, though. We’re doing our best to massage DP’s ego, while still advocating for something to be done. Stay tuned. (As a talisman, Greg just ordered garlic bread for lunch!).

Greg finished his 16 doses of Buslafan, last night and today starts the big guns – the Cytoxan. One problem is that Cytoxan requires TONS of fluids, and he can’t have tons of fluids because his heart can’t move it. If he doesn’t have the fluids, he could have major bladder problems, because the Cytoxan can eat the lining of your bladder. Its treatable, but not pretty. It involves a local anesthetic and something called "bladder irrigation." (All men slap your legs together and cringe now.) Yeah, its about as icky as it sounds. They’ve decided to give him half the normal amount of fluids (which is still a ton) and lots of Lassix. He just finished his first dose of Cytoxan (another tomorrow), and his BP has dropped to 95/68, pulse dropped to 110, and he feels higher than a kite. So, we understand they’re having a meeting about him as I write this. Nothing is never easy anymore.

On a lighter note, Sadie, Skibby and Matthew are coming up tomorrow. Matthew can’t wait to ride Daddy’s bed up & down. Sadie & Skibby will visit with Greg and I’m taking Matthew to the Magic House. He’s very excited. I really miss both boys. Eric has to work, so he won’t be able to make it. Bummer.

Thanks again for the comments. Greg really enjoys them. Debbie, I don’t know about publishing this thing. I’ve probably already committed libel.

Keep up the prayers. Remember, June 1 is the big day!

Love,

Greg & Ann

Update, 4:15 p.m.: O'Maher wins! She came in just now & told us she is starting him on a new drug to get the heart rate down (calcium something or other -- I'm a lawyer not a doctor da---it!). She hopes, but can't guarantee it will work. Should take a few days. The prayers & finger crossing must be working! Thanks!

Thursday, May 28, 2009

Sweatin' With the Oldies

Thanks for all the comments yesterday. I’m glad to hear all the folks at the conference in Minneapolis are having a good time. I’m really sorry I missed the Columbian restaurant. I really wanted to treat everyone to the "beef feet soup." Come to think of it, some of the food from the cafeteria here is about as appetizing (and mysterious). When I talked to David this morning, he said he was being me, sitting in my spot, and sleeping. Thanks David! I can use the rest. How was the ball game? Did Ian enjoy $1 hot dog night? I think I saw a story on SportsCenter about the Twins’ stadium running out of hot dogs for the first time in history. Good work!
Well, I wasn’t kidding when I said I need the rest. We had an interesting night last night. Throughout the day yesterday Greg continued to run fevers, and his heart rate was really high (130s), so they doubled his dose of beta-blockers. As the day progressed, his breathing became more labored, especially when he was laying down. His ankles & feet looked like basketballs, and he couldn’t get his shoes on. His energy level was at zero. Something was definitely wrong. The nurse listened to his lungs and said she heard some "crackling" – a sure sign of fluid buildup. They called for a chest X-ray and gave him a double-dose of Lassex at about 8 p.m. to make sure he’d be up most of the night. Timing is everything (insert sarcasm here).
About 8:30 p.m., Skibby called. She’d been doing some research. One of the side-effects of the beta-blocker is congestive heart failure (!). Its rare, but possible. And, as we all know, Greg never does what he’s supposed to do. Plus, they doubled his dose yesterday, and his heart rate seemed to go up. In fact, its increased since they started giving him the drug in March. She suggested removing it, possibly changing it, and calling in a cario consult. Just as we ended our conversation, DiPersio walked in (it was after dark). I told him Skibby is a pharmacist (so he wouldn’t think she’s just some yahoo), and her theory. He pretty well blew us off. With no explanation, or any attempt at conveying any info, he pats Greg on the shoulder in a condescending sort of way, and says "We’ll get him fixed up." And with that, he was gone. Never to be seen again (at least until the sun goes down today).
About an hour later the nurse comes in. DiPersio didn’t change the beta blocker, and added a steroid instead. He thinks the heart rate issues are caused by the fevers, which he says are caused by the disease. Of course, he didn’t tell us this. He didn’t tell us anything. The nurse had to. She sympathized with our plight, but there’s only so much she can do. So, after much thought, Greg decided to go along with DiPersio on the steroid, and only take half the dose of beta blocker (his original amount).
Steroids cause fevers to go down (good) and night sweats (bad). So, we were up at least 4 times (I lost count) to change the bed and all his clothes. Oh, and the chemo is definitely rearing its ugly head too, in the form of Montezuma’s Revenge.
The end result was that he didn’t run fever overnight, and the fluid on the lungs appears to have dissipated. So, maybe DiPersio was right. On the other hand, the heart rate is still around 120, and about an hour ago, he got a fever again (he got a second dose of steroid about 2 hours ago). So, maybe he’s wrong. But that’s impossible, because he says he’s never wrong.
The resident who does the rounds in the morning is much more willing to explain things. So we talked with her this morning. She’s not convinced that his ticker is fine, as a test they ran the last time he was here showed some function (I can’t remember what) at 47 percent, when normal is 50 to 75 percent. (I know, not much of an explanation, but I’m kinda tired right now). This is the first time anyone bothered to tell us that. Anyway, she’s inclined to get a cardio consult, but DiPersio runs the show. According to her, DP "usually isn’t too inclined to ask for help." (Insert gasp of surprise here.) So, we’ll see. As I’ve said before, this ain’t our first rodeo, so we’re willing to press, especially when we don’t get satisfactory answers. I trust his intellect. I just want to know why. If he wants to be a pompous ass, that’s OK, so long as he fixes this. Stay tuned.
On a lighter note, let me just repeat that daytime TV sucks. But, we’ve laid in a good stock of DVDs. Yesterday, we watched the entire first season of "Soap." And the Stanley Cup Playoffs are on in the evenings. Michelle L, thanks for "John Adams." Maybe we’ll start that today. I’ll let you know how it is.
That’s way more than I intended to write today, so I’ll close for now. Just let me say thanks again to all for the prayers & good wishes.
Love,
Us

Wednesday, May 27, 2009

Its Starting to Work

Well, as they warned, the chemo is beginning to show its effects. Greg woke up this morning feeling very sore in his mouth, and very tired. He’s pretty much been sleeping all day. Except when they give him the Lassix. His feet and ankles are very swollen. He can barely get his shoes on. But that’s not surprising, since they have to give him tons of fluids to flush the chemicals out of his body. So, its fluids all night, Lassix all day. Again.

Actually, this is a good sign, because it means the chemo is doing what its supposed to be doing. Plus Dr. DiPersio says that as the chemo starts working, his fevers, which have been persistent, should abate. He thinks the fevers are from the disease, so it makes sense. As the cancer cells are destroyed, the fevers go away. And, last night, he only had one "sweating" episode. So, I guess DiPersio was right. He always is. Just ask him.

He got unleashed from the IV machine for a few hours today and managed to take a short walk around the unit. That’s important for lots of reasons: excess fluids, keeping his lungs clear, blood sugars, and general strength (which hasn’t been that great). He was a little wobbly, and I’m going to try to encourage him to go again later. Also, his appetite pretty well sucks. He did manage to eat a little cereal this morning, though. Food is starting to taste "off" as well – another side effect of the chemo. Its hard to keep up your strength if you don’t eat, and its hard to eat when you feel so crummy.

His hair is still intact (that won't go for a few more weeks), and his vital signs have all been stable, except for that high heart rate thing. Its reared its ugly head again. But, his blood pressure is very good, so while they’re concerned, they’re not in panic mode. They’ve doubled his beta blocker & are going to wait & see.

That’s about all for today. He continues with the Busulfan through Thursday, then he starts the Cytoxan. We’re still on target for the transplant to take place June 1.

‘Til tomorrow!

Tuesday, May 26, 2009

So Far, So Good

Pretty unventful day, which we hope will continue for a while. Greg is starting to feel some effects of the chemo in his mouth, throat & esophagus. He has his "magic mouthwash" which containes lidocaine & Maalox, among other things, which helps. He can swallow it, which is good when his throat etc. is involved. This is all to be expected.

The no sleeping rules are in full effect. Last night he got 2 units of whole blood (2 1/2 hours each), 2 doses of chemo (1 hour each), phosphorous (6 hours) & antibiotics (1 hour each). When each dose is finished, the IV pump starts beeping. Listen closely. Its so loud I'm sure you can hear it from wherever you are. Our nurse had a busy night, so sometimes it took a while for her to come by and turn the damn thing off. But it all beats the alternative!

Thanks for the comments. Kim gets a special shout out for the vampire jokes. Speaking of which, Dr. DiPersio came by last night. Loyal readers will remember we only see him at night, and he works in BLOOD cancers. Hmmmmm.

Other than that, I've spent the day trying to get over the fact that Obama didn't give me the nod for the Supreme Court. Oh, well, he must have known I'm a little busy right now. Better luck next time.

Keep up those prayers. So far they seem to be working!

Love,

Us

Monday, May 25, 2009

We're Here & Rolling!

We got here about 4 p.m. yesterday, after driving through a couple of very heavy rainstorms. But we arrived safely and got organized, at least as much as one can be in a room this size. Yes, its "urban camping" again. We're actually getting pretty good at this now. I packed pretty efficiently, and we managed to remember most of the little extra things you need to be comfortable, which aren't provided. Saw some nurses and staff we recognized from previous excursions, as well as some new faces. I'm almost positive we're in the same room we were in last summer. The good news is, we're on the side of the building that provides the good Internet access. The bad news is, I'm having even more connection troubles (just different ones). Hopefully, I can get them resolved soon. (To paraphrase my brother-in-law: "How'd your computer get broken?" "Same way the Coke machine got broken." "How'd the Coke machine get broken?" "I threw the computer through it.")


They don't waste any time around here, even on a holiday weekend. Greg got his first dose of chemo shortly after arrival. He's getting a drug called Busulafan to start with. He'll get 16 doses, each 6 hours apart. This is strong stuff. The nurses gown up with a "chemo" gown just to hook up the IV. One of the side effects is seizures, so he's on an anti-seizure med, too. I've asked several nurses, who all said that they've never had a patient sieze yet, so I figure the risk is pretty low. After that, he'll get Cytoxan (sp?) for 2 days, then a 2 day rest (although they start him on the anti-rejection drugs during that time. The magic day is June 1. That's the day he'll get his new cells. Its also called "Day Zero." So, today is "Day minus 8." Then we start counting over, with "Day plus one" and so on.


He got two doses of chemo overnight, plus (surprise!) he also needed plateletes. We figure he'll need red blood tonight. So, the rule against allowing anyone to actually sleep while they're here is still in effect. Plus, someone actually came in at 2:30 this morning to take a chest X-ray. I'm beginning to think this place is staffed by vampires.

His ankles are already very swollen (some was left over from the last hospitalization), so the docs must be happy. We're already talking about lassix. He's sleeping now, so I've moved down to the family lounge so I don't wake him up when I throw the computer through the window. The Cardinals are about to begin a game against the Brewers. I have too many loyal readers from both camps, so I'm not even going to mention who I'm rooting for. (Well, no one actually. Its not like its a hockey game for goodness' sake!).

He's still running neutropenic fevers, so he had to have a complete change of everything a couple of times last night, too.

The worst news we've had so far (and lets keep it that way), is that no one here thinks he'll be out in 3 or even, probably 4, weeks. But, for right now, he's where he needs to be, so I can't complain.

Thanks to all for the prayers, comments & good wishes. If people want to send via snail mail, you can look up the address on the web (I don't have it with me) and put his name, Unit 5900, room 5927. Cards & letters only. No flowers or edibles. That's one of the few rules around here. If you send flowers, the nurses get to keep them at the nurse's station. Much as I like all of them (they do a great job), I really don't think you want to spend your hard-earned money on that!

Thanks to all for everything, as ususal. I know I sound like a broken record, but its true. You all mean so much to us all.

Love,

Ann & Greg

P.S. I keep forgetting -- no Total Body Irradiation. Seems he had too much from St. John's in 2003. Your spinal chord is like a giant electrical grid. Any more radiation and his spinal chord could short out & he'd be paralyzed. Glad they figured that out BEFORE they gave it to him!

Sunday, May 24, 2009

A message from Greg

"We are finally here (at Barnes) and the transplant is imminent. Whether you cross your fingers or clasp your hands in prayer, I need that help now more than ever. I am scared yet filled with anticipation and hope. Together we can do this. Thanks for all you've done so far. Just keep it coming. See you all soon."

Love,

Greg

Saturday, May 23, 2009

How to Post a Comment

As we gear up for Greg'g Great Summer Adventure of 2009, I realized a number of people have told me they'd like to leave comments on the blog, but can't figure out how to. Greg really enjoys them, especially when he's feeling crappy, so I thought I'd take this opportunity between never ending loads of laundry to give a little primer to those who are having trouble.

There's a couple ways to do it.

First, no matter which way you pick, type in your comment on the comment page in the box.

Then, if you want, you can create a blogger account using an e-mail address & a password. You will be given an opportunity to create a "name" which will automatically appear with your comment. You will need to sign in each time. You can sign in from the blog main page, or under "Choose an Identity" you can sign in there. (You might have to do this before you write your comment, I'm not sure)

If you're too intimidated to try to create an account, you can remain "anonymous." (Just be sure to sign your name to your comment so we know who you are!). Under "Choose an Identity" you need to click the "anonymous" option after typing your comment. Then, you MUST type in the funky word you see in the box to validate your comment. This is designed to keep away spammers. Once you do that, you hit "Publish Your Comment." That's it!

Now, I don't usually leave comments, so those of you who do, if you have any further tips, or see that I've made a critical error in these instructions, please post a comment telling us so.

That's all for now. We're going to spend the day with the kids, get ready & head out tomorrow sometime. They'll call us when the bed is ready. We'll post either tomorrow or first thing Monday if we get there too late tomorrow.

Until then, Keep Praying!!!

Love,

Us.

Thursday, May 21, 2009

We have a schedule

Greg got a call with the schedule earlier in the week, but this is the first chance I've had to blog.
Greg's admission date for the transplant is Sunday. From what I understand, that's pretty well carved in stone. Grandma Sadie & Auntie Skibby are enroute as I write this.

The original stem cell donor didn't work out for some reason (the 27 year old guy). So, we have a new donor, a 30 year old woman. (She's a 7/8 match as well). That's about all we are allowed to know for the first 2 years. The only additional fact they'll give us is that she is "from a European country." I'll leave the buxom blonde Scandinavian jokes to Ian. Because she's an international donor, Greg had to sign a whole bunch of extra consents just in case she has some rare tropical disease. Again, I'll leave the jokes to the commentors (commenters?).

So, I'm writing this from the outpatient treatment clinic in St. Louis, as Greg has to have his central line (fancy IV) placed at or before admission, and the vascular surgeons don't work weekends (and, this is a holiday weekend, too). Also, they "forgot" to order the final typing of Greg's blood needed before the transplant. Its just one crummy vial of blood that they could have drawn anytime in the last several inpatient and outpatient trips we've made up here, but no one ordered it. We're really getting used to being at the mercy of the health care system. Sigh.

The plan for today is plateletes (he needs to be at 50 before the line can be placed -- he hasn't been at 50 in over a year! This a.m. he was at 12), plus 2 units of whole blood, plus the line placement. They have assured us he will get to go home tonight, but I don't believe them anymore. I told Greg I will believe it when we're south of I-270, and not before. The ONE thing I've learned is to be skeptical. I packed for 2 days.

We drove up last night, arriving about 10 p.m. Eric is flying solo again, pizza money in hand, and Matthew stayed overnight at the babysitter's, Julie England. I can't thank her enough. I figured Matthew would be thrilled to have a sleepover with Emma, the love of his life, but alas, it was not to be. Yesterday morning he had a complete meltdown, saying he didn't want to stay, he was scared, etc. etc. etc. This, of course, triggered a meltdown on my part. That made Greg start to go. Eric took one look at all of us, started to tear up & bolted for the door, on his way to school. I spent the drive to Julie's trying to negotiate with little Clarence Darrow in the back seat. It was like trying to convince the hanging judge to grant clemency in a death penalty case. I used all my best arguments. Finally, after Julie assured him they had a hallway light, and I showed him that I packed his favorite night light, plus "Licky" the dog, he grudgingly condeded. All was right with the world. Or so I thought.

It appears everything was chugging along nicely until, at 7:30 last night, I made the critical mistake of calling him to say goodnight. The first half of the conversation was great. Then, all hell broke loose. He completely lost it. (Sorry Julie!) I promised I wouldn't call back to talk to him today. I just called & spoke to Julie's mom though, and seems he got over it pretty quickly, and was excited to stay at Emma's overnight. Kids are so fickle.

That's about all I can think of for now. We hope for a quiet 2 days with the kids, & still have a ton of stuff to do before we can leave for 3 to 4 weeks. The amount of coordination needed is amazing. I'm putting the finishing touches on the "Care & Feeding Manual -- 2009 Edition."

We're rapidly approaching zero hour. Greg, although scared, is amazingly calm, knowing this is all out of our hands. I alternate between that and being on the verge of a nervous breakdown. But, no time for that!

Please keep those prayers coming. Also, thanks for all the good wishes and help from everyone. I know I say it all the time, but we really couldn't be getting through this without all of you.

Love,

Greg & Ann

Friday, May 15, 2009

No Such Thing as a Routine Visit

Greg and I went up to St. Louis for the day yesterday. The sole purpose was to have a consult with Radiation Oncology that he needs prior to the transplant. They couldn't fit it in while we were there last week inpatient. Figures.

Let me preface by saying that Matthew's preschool graduation was at 6 p.m. Greg's appointment was at 12:30. All we needed to do was get on the road by 2 (2:30 at the latest) to make it.

Well, seems there's a rule around here that you can't go anywhere (I think even the cafeteria and the bathroom) without them taking your vital signs. Even though this was just a consult for the radiation they're giving him next week. So, of course, Greg had a fever. It was 101.5. Greg said that was impossible & made the nurse take it again 10 minutes later. It was 101.9. He decided he wanted to go with the first one.

So, we did our consult, and they called Vij's office. Vij only keeps clinic hours on Tuesdays & Fridays, so he was out. They told him to go to the lab at the Cancer Center to draw blood cultures & then go to Vij's office to see George, the nurse practitioner. We got to the lab at 2. The meeting with George was a trip (he's a little strange), but the bottom line is, by the time we got there, his temp was 100.7. Then, like a minute later it was 99.6. He feels really crappy, but that's become the norm the last few weeks.

Altho George was a little strange, he is now my hero. He did NOT admit Greg to the hospital. He needed plateletes (he was at 5!) and whole blood. They got the plateteles into him and one dose of IV antibiotics. Then George sent him home with 2 new oral antibiotics, plus an oral drug to prevent bleeding. I forgot to mention that Greg has sores & blood blisters all over the inside of his mouth. A total of 2 doctors, 4 nurses & 1 nurse practitioner looked at them & each one said they'd NEVER seen any that bad. He can't eat anything. Yesterday he consumed a grand total of 2 bottles of cranberry juice, water and about a quarter cup of cottage cheese (which, by the way, costs about $2.50 from the salad bar at the cafeteria). He's at the clinic here today getting red blood, plus whatever else he will need. He continued to run a low-grade fever on & off all the way home. It was really interesting riding home with the heat on, Greg wrapped in a blanket & his seat warmer set to "high." I think I lost 10 pounds. But, the explanation for this fever is probably a "neutropenic fever" rather than the infections he's been getting since November. His white count is so low, his body is compensating for it. He went all night alternating between shivering and sweating. Oh, and all the antibiotics have really affected his GI tract in a negative way, if you catch my drift......

We got home very late. Eric, super wonderful big brother that he is, picked Matthew up from school, took him to Steak & Shake for dinner, had the foresight to buy a disposable camera from Walgreen's (my camera was in my trunk in St. Louis!), went to graduation, and basically salvaged the day for his baby brother. I don't know what I'd do without him! Matthew was very disappointed that we missed it, but handled it better than I did. I think I've managed to raise a couple of very outstanding kids.

Grandma, Uncle Tom, Aunt Tammy, Aunt Skibby & Uncle Don also sent Matthew a bouquet of cookies for graduation & that was waiting for him when they got home. Perfect timing. Thanks so much to all of you.

The interesting news of the day relates to the TBI (Total Body Irradiation) he will be getting as part of the transplant. Sounds awful, but actually, that, in combination with high dose chemo, is actually LESS toxic that chemo alone. We were very surprised to hear that. The purpose is to kill off the cancer cells in all the little nooks & crannies that the chemo can't reach (I'm sure there's a better scientific explanation, but that's the gist of it). There are some side effects, like a pneumonia-like condition, and liver & kidney problems, but they are usually very treatable. The biggest problem is that in 3 to 5 years he will very likely develp cataracts. He'll take that. He would gladly be around in 5 years to have cataract surgery.

As far as timing goes, we will receive a phone call next week sometime (probably late in the week) or over the weekend, saying that everything's ready & to come on up. We won't get much warning. Grandma Sadie & Auntie Skibby are coming the 21st to stay with the kids. I'm not exactly sure what the plan is, but Skibby has worked things out, & I'm just flying by the seat of my pants.

So, that's all the news for now. Actually, just writing this made me feel better. The blog is very therapeutic.

Keep the prayers coming. We really need them!

Love,

Greg & Ann

Monday, May 11, 2009

We are home

We are sleepy. Got out after 2 on Friday (they did manage to find him some plateletes). We go back Thursday to meet with radiation oncology. Will try to post Friday with more details on the upcoming transplant.

Greg slept pretty much all weekend. Is trying to sleep more today, but needed to go in for plateletes again.

Thanks for all.

Love,

Us

Friday, May 8, 2009

Friday Update

OK, its 10:30-ish, and it looks like discharge is a go. We had a little scare this morning, when they took his temp and it was 100.7. But, they took it again 10 minutes later, and he was normal. I told him to cut that out.

We can't leave for a little while, as they just gave him Lassix, and he's not getting into MY car until that does its magic. Also, Dr. NeedsDecaf hasn't done the paperwork yet.

Dr. Vij stopped by last night, so we won't need to see him today. As far as he's concerned, the transplant is still on schedule. He says its "now or never." I hear that they're collecting the cells from the donor as we speak.

No word yet on whether they're going to continue with the Velcade until transplant, or just give him the next few weeks off. Also, no word on discharge meds, or clinic appointments. I know he'll need plateletes tomorrow, as he technically needs them now, but there's a shortage. He was at 18 last night (20 is the cutoff for transfusions), but there's people on the floor here who are at 5, so naturally they get priority.

Also, I'm watching the weather channel while I type this, and it looks like I get to drive through a hurricane on the way home, so we have that going for us. They just reported Joplin had 85 mph winds.

That's all I know. We're just anxious to get home, spend some time with the kids & get some real rest. Greg can't wait to sleep in his own bed. I hereby declare tomorrow an official day of napping.

Thanks again to all. I can't say it enough. It means the world to us!

Love,

Greg & Ann

Thursday, May 7, 2009

Going Home!

We just got the word from the attending physician that, if Greg doesn't have any fever tonight (and he probably won't, as he's been fever free since we got here), he can go home tomorrow. Today they got most of the pre-transplant stuff done, all except the consult for the full-body radiation he gets prior to the transplant. We're pretty sure this is a consult to tell him all the horrors involved in that process, and how crappy it will make him feel. He pretty much knows that already, but they've rescheduled it for next Thursday (here in St. L, of course). I'm going to make a few calls in the morning to see if we can't skip it, or do it when he comes up for the transplant itself. My guess is, he can't skip it for informed consent reasons (damn lawyers!). Sigh.

Aside from the shoulder pain, which has actually gotten worse, Greg feels pretty good. They just can't figure out what's causing it. Kris came up with the best possible explanation yet -- stress. Makes sense to me. He's just really tired, and really tired of being tired. But, the good news is, his kidneys are just fine, and no one here even hinted at a postponement (or worse -- cancellation) of the transplant. Seems his crappy numbers aren't that unusual here, where they see a lot of people in his condition, and a lot who are worse. Its just another day around here.

Last night we got NO sleep, as he needed antibiotics, antifungals, anti other stuff, plus two units of blood, etc. We both tried cat napping today, but that was impossible, as there's rules against that here. The night nurse promises a quiet night, though, so I'm hopeful.

Matthew and Eric were both thrilled to hear that we're coming home tomorrow. Hopefully, we can have a nice, quiet weekend. Although I'm guessing (hoping?) that Greg will have labs drawn on Saturday, just to make sure. His plateletes are borderline right now, and the hospital may not be able to get any into him before discharge. Seems there's a shortage. But, that's what he does now. (I think he needs a new hobby.) Let's hope its not for too long, and the transplant takes with as few complications as possible.

Once again, thanks for the prayers, good wishes & comments. These are difficult times, but its much easier with the support of such wonderful family and friends.

Due to my connection issues, I don't know if I'll be able to blog in the morning, but I'll try. Until then, keep the prayers coming!

Love,

Greg & Ann

Quick Update

I'm having major Internet connection issues for some reason, so I'll try to be quick before I get kicked off again. (When that happens, I can't reconnect unless I completely reboot the computer). I think its because he's on the courtyard side of the building. I've moved over to the family lounge, and things seem to be a little better.

They've taken him off most of the meds relating to heart rate and diabetes. Still giving him the antibiotics. BP is normal again (it had been very low). Kidney function is normal. Temp is normal. Heart rate, altho still a little high, is much better. Shoulder/upper chest pain is probably worse. However, they actually care about that here and are trying to find the source/problem. He just went down to X-ray for more pictures. I told him to smile nice.

Its a little early to be talking discharge (he hasn't even been here 24 hours), but if I were a betting person (which I am), I'd bet he's home sometime this weekend. Let's hope.

Meanwhile, we're working on getting all the stuff done he was supposed to be doing outpatient today and tomorrow anyway (I COULD be staying in a nice comfy hotel with room service and a full bar right now instead of urban camping -- Greg really knows how to show me a good time!). We've only seen one doctor so far today, and she really needs to switch to decaf, so I'm not really sure what her plan is. (It was like that episode of Star Trek where the aliens moved so fast, no one could see them.) The docs will staff his case later this a.m., and we'll see the attending oncologist at some point late today.

Matthew says he's having a great time with Riley (I assume with Kris, Jim & Jacob too), and Eric actually bought fruit and milk! (And $40 worth of frozen pizza).

Greg and I really enjoy the comments & he sends his love & thanks to all. Joan, tell Ivan to save him some beer. Francis, I know you know everyone, but this surpasses even my expectations! Sally, thanks for your kind words. Debbie, tell Larisa that if she names the baby "Ann" I'll mention her (the baby) in my will. Larisa: if you read this, try drinking orange juice. I heard somewhere that can put you into labor. I told your mom this the other day, but she said she wasn't going to tell you that.

We're just trying to keep our sense of humor, since so much of this is totally out of our control (and we're both control freaks, to some extent.)

I think (hope?!?) he'll be home soon. That's only because I really overpacked. (No trip to Target for new socks & underwear this time!) Had I not, they'd keep him longer. I'll try to blog more later, but we probably won't know any more until later this evening or maybe even the morning.

Love to all,

Greg & Ann

Wednesday, May 6, 2009

These People are Really Smart!

We're here. Got here a little while ago, and feel better already (both of us -- psychologically). Spoke with the nurse and the doctor already (not Vij, but these guys are pretty interchangeable when it comes to knowledge). Anyway, they don't seem terribly concerned about this kidney thing -- they have several possible explanations, all of which they believe they can fix. Greg is in very good hands. Oh, and he's NOT in ICU. He's on the regular unit -- seems there was another communication snafu between St. John's & Barnes. But, the bottom line is he's in great hands, and we feel lots better. We're really tired, and they have a lot more stuff they're going to do tonight -- including more red blood, so I'll blog again tomorrow after we talk to the docs. Just wanted to let everyone know things are going well so far.

Keep the prayers coming. Love the comments, too. Thanks!

Love,

Greg & Ann

On The Road Again

Yesterday we received word that Barnes had a bed available for Greg. Unfortunately, due to a communication snafu, St. John's (here) didn't know anything about a transfer to Barnes. So, because no paperwork was prepared, we lost the bed. However, we just got word a few minutes ago that they have a bed available. We've also been told they want to admit him to ICU there, which is why it took so long to get a bed. (Actually, we've waited longer before, but don't tell them that.) We're waiting for word on the ambulance to transport. Yes, another $3500 ride. I'm looking into the frequent flyer miles.



Medically, things are pretty much up in the air. Greg got whole blood and plateletes yesterday, and today his numbers are the same or lower. None of them stuck. So, he's getting plateletes now, and the last plan we heard was that they'll give him the blood in St. Louis. His kidney function is only a little better, and that's what's really got everyone worried. Dr. Raju told me this morning that, since they've pumped him full of fluids over the past few days, and the kidneys haven't improved, she thinks that its the cancer, not dehyration, that's causing this. So, he's definitely going to the right place.

I'm packed, and Matthew is going to go to the Wherley's. Thanks Kris & Jim! The good thing is, he's very excited (I think it has something to do with their dog. Plus he and Kris made cupcakes the last time he was there.) Eric has plenty of pizza money, so he's set. I pointed out that he could use the money to go to the grocery store and buy healthy food, and he looked at me as if I had just landed here from another planet.

Deb, a nurse here on the floor as well as a good friend (I can't tell you how handy THAT is!) speculates that its possible they may just keep him in St. Louis for the duration -- clear up whatever this is and go straight into the transplant. We will see. In the meantime, we're living minute by minute. I'll keep everyone "posted" as much as I can.

If I don't return your phone calls, please don't be offended. Even with the blog, the amount of time we need to spend on the phone just with the kids, work and keeping our head above water is overwhelming. Please know that we appreciate all the prayers and good wishes. Greg and I check the comments on the blog several times a day, and really appreciate those. You all help us keep our sense of humor, which is more important now than ever before. We can't thank everyone personally, so this is our best vehicle for keeping in touch. We love you all. If you do need to call, please use the cell phone numbers, as the room phones tend to "scream" and wake Greg up if he's trying to sleep. We may not always be able to answer, but we'll try.

Thanks to all for everything!

Love,

Us

Tuesday, May 5, 2009

You See the Most Interesting People. . .

. . . when you hang out in the ER in the middle of the night. I know, because that's where Greg and I spent last night. Kind of like a cross between a freak show and going to the WalMart SuperCenter at 2 a.m. However, to be fair, I probably wasn't looking my best at that point either.

When I got home from work, he was running a fever of 103+. This is becoming SOP. I called Barnes, and naturally, there was no room at the Inn. So, he's at St. John's in Springfield. But I called the nurse coordinator and she is starting the paperwork for a transfer. Dr. Vij is the attending on the transplant floor right now, so I told her to tell him to discharge someone so he can get in. She said she'd do her best. Loyal readers will recall that the last time we tried this hospital to hospital transfer thing, it only took a week(!). Lets hope for better & speedier things this time.


Medically, the bottom line is that he was in clinic yesterday and everything was pretty well normal, for him. He needed plateletes, so he couldn't get Velcade (which they rescheduled for today but he probably can't get because his counts are so low). He's going to get blood today, and they're hanging the usual rounds of antibiotics. The part that's really serious is that his kidney function is 50 percent That's a very bad thing. Its not uncommon for multiple myeloma patients to have kidney involvement, but so far Greg's have always been good. It could be related to dehyration because of the fevers. If that's the case, they can fix him up & he'll go on his merry way towards the transplant. (His BUN (whatever that is) is low too, so that's a good indicator that its dehydration, not MM). However, if its the multiple myeloma that's causing the kidney trouble, he may not be stable enough to get the transplant. There's a whole lot of drugs involved in the transplant that have to be filtered through the kidneys. We won't know for a few days what the source of the kidney trouble is. And, I won't believe anything until I hear it from Vij's mouth, anyway. Loyal readers will remember that the info changes from shift to shift, and in the end, we never know as much as we would like, anyway.

Oh, and he's developed severe, intermittent pain in his left shoulder. No one seems to know why, and no one seems to care, either. Its unrelated to his "Popeye" arm thing, as that's on the right side. Sometimes it feels like the wheels are really coming off. . . .

That's about all for now. I'll post more when I know something (or when they change their minds about what they've already told us).

Love,

Us

Monday, May 4, 2009

We're rolling

Real quick, as I'm buried today:

Greg got a call Thursday from the transplant team at Barnes. The donor is a go. He's 27 years old. Greg didn't think to ask where he's from (not that it matters, I'm just curious). He's a 7 out of 8 match, which increases the risks of complications, but its the best he can get. They're talking about an admission date the week before Memorial Day. YIKES! We didn't think it would be this quick, but Vij is getting concerned because it appears Greg is getting "transfusion dependent." He's getting several each week now, both plateletes and red cells.

He's got tests scheduled Thursday & Friday in St. Louis, and we're meeting with Vij on Friday. Will post more after we meet with him.

Greg has been really tired, and he developed some wierd infection in his forearm last week. Its red, swollen (he looks like Popeye) & very warm to the touch. They checked for a blood clot, which was negative, so he's on antibiotics for the infection. Its slowly getting better. But, for the first time, he really feels like he's got cancer. Its definitely time for the transplant -- as scary as that prospect is.

That's all for now. We REALLY need those prayers! Thanks to all!

Love,

Us.