First, let me say that everything is OK. We just had a ridiculous day yesterday that I want to share with you.
Yesterday (Thursday) Greg had to go to clinic at 7:30 for treatment. They knew he was coming, so everything was (presumably) ready. The Clinic is located inside the hospital. They draw labs, as usual, and his reds are 8.1 and his plateletes are 6. Low, but he's been there before. The platelets especially. And, his heart rate is high, but we've been dealing with that, he's gotten a complete workup and his internist on Tuesday wasn't too worried about it.
So, Greg is sitting there, waiting for them to get him some blood and plateletes, and the next thing he knows, they're bringing him a wheelchair & telling him his local oncologist wants him admitted to the hospital. (!) He's like "WTF?" but, he goes along, although he's getting pretty upset. No one tells him why. We initially think its his high heart rate. He tells doc about all the workups he's had, etc. He's probably not being as tactful as he could at this point, but he's pretty mad because a) he can't see a reason for admission, and b) no one tells him a reason for admission.
Anyway, long story short, they give him everything he would normally get at the clinic as an outpatient, only he gets it inpatient at probably twice the cost and twice the time. Nothing, and I mean NOTHING is done about the heart rate. It went down some, probably due to the blood transfusion, but that would have happened anyway at the clinic. I took the boys up to have dinner with him, and we asked the nurse to check his chart to see the reason for admission. She looked & said there was nothing there. It was blank. I asked her if she knew a reason, and she admitted she did not. At about 7 p.m. they told him he could be discharged. That super-efficient process took until after 9, and he didn't get home til almost 10.
So, we've had another official hospitalization. We just don't know what for. Or why. Just blowing through the insurance money, I guess.
I'm beginning to think this is all my hairdresser's fault. Last November, I had a hair appointment. I had to cancel because Greg went into the hospital. In January, I had another. Had to cancel because Greg went into the hospital. In March, I had another. (Everyone this time!) I had to cancel because Greg went into the hospital! I have one for this afternoon. I told Greg yesterday when he first got admitted that I'm going to this appointment NO MATTER WHAT! My secretary says I need to go to break the cycle. Probably not a bad idea. Plus, I'm looking pretty shaggy.
So, that's our excitement for the day. Hopefully, it will be a while until I have to post again!
Love,
Us
Friday, April 24, 2009
Monday, April 20, 2009
The Plan
I've been putting off writing this one for a long time, but Greg has been after me to get everyone on the same page. I was supposed to do it this weekend, but I found tons of excuses not to. It wasn't too hard, as I've come to believe that my laundry will NEVER be caught up -- just when I think it is, I turn around and there's 6 more loads. It was rainy & cold AGAIN this weekend, but I also got the grass cut. I know, you're thinking: "Sheesh! That what she's got a teenager for!" Unfortunately, Eric had 8 (!) lacrosse games this weekend, 4 in KC Saturday and 4 in Columbia Sunday. Huge thanks to the Altoonians for taking him (and feeding him!) all weekend. Oftentimes I don't know what I would do without such great friends. And, considering it rained in those places too, and games don't get called unless there's lightening, even with 6 loads of laundry I definitely got the better end of the deal. But, I digress (again!)
Greg is doing well. He's very tired (who isnt?) and he's getting something or other at the clinic or hospital almost every day now. Here's the scoop:
When we went to see Dr. Vij way back on April 3, he expressed his concern (echoing ours) that Greg has had way too many transfusions, hospitalizations and infections over the past several months. This was really no surprise. He said its time to proceed with the allogeneic transplant -- which we were hoping to put off for a while. The last biopsy showed really no change to his multiple myeloma, but the myelodisplastic syndrome is progressing faster than Vij would like.
Dr. Vij spent about 40 minutes scaring the you-know-what out of us, talking about the dangers, pitfalls and risks involved (I'm sure his lawyers made him do it!). Basically, Greg could come through this with flying colors, as he has done with the autologous transplants, or he could be in real trouble real fast. There is absolutely no way to tell.
The transplant will proceed at the beginning just like the others, with about a 3 week hospital stay. He will receive high dose chemotherapy and full body radiation to kill off every last cell of bone marrow he has (he didn't get the radiation with the others). Then, he'll receive the donor cells. (BTW, it will take about 2-3 months to get the donor lined up, mobilize his/her cells, collect, freeze and transport to St. Louis. They're working on that now). Assuming all goes well, he could be out of the hospital in about 3 weeks, but then must stay, as an outpatient in St. Louis, for 3 to 4 months (!). Complications can arise from the usual: infections and bleeing, and also from graft versus host disease (the new cells attack his body) or the reverse (his body attacks the new cells). He can have skin, liver, intestinal and a whole host of other problems. Or not. How's that for definite? But, as Greg sees it, he really doesn't have any choice. And that, believe it or not, actually makes this easier. We're not sitting here agonizing over what to do, what treatment option to pick, etc. This is the only one. At least he won't be left second guessing later on. Greg simply cannot go on the way he has been. Its too dangerous, not to mention his quality of life pretty much sucks.
In the meantime, Dr. Vij has started Greg on Velcade, a twice a week IV drug to try to limp him along until the transplant (Greg was part of a clinical trial on Velcade back in 2003). He's not too hopeful it will have much effect on the disease, but its worth a try. He gets that here in Springfield. However, the side effect of Velcade is that it lowers your counts -- you know, the ones he doesn't have to begin with. That's why he's getting red blood and plateletes several times a week. He's also trying to still work as close to full time as possible. Everyone in his office has been so supportive and caring -- he wouldn't be getting through this without all of them, too.
However, there is actually a small bright spot in all of this: because he's getting active "treatment" via the Velcade, he can get shots of Neupagin -- a drug designed to raise his white counts. State/insurance guidelines say he can only get the drug if he's getting treatment. So, his white count is actually up some (last week it was through the roof!), lowering significantly his risk for infection. Doesn't seem to make sense. The last five months he couldn't have the shot ($1,000 a pop -- less than the cost of an ambulance ride to St. Louis!), so the insurance company had to pay for four hospitalizations instead -- two of them out of state! Even I can do that math.
Another bright spot (not!) of the Velcade is that it comes with a high dose of steroid -- whick really messes up his blood sugar. So, he has to check that regularly, and is on insulin. And, another side effect of the steroids is being just a wee bit grumpy. Ok, unbearably grumpy sometimes. However, because of Greg's blood sugar issues, they've got him on the lowest possible dose, and that has not really been an issue so far. Here's hoping! We went through this in 2003 and I almost had to throw him out. He's planning to join the WWE if the steroids continue.
So, I think that's about everything. We go back in May to see Vij, and should get a better idea on timing. I'll post again then, and in between if anything exciting happens (but it better not!).
Thanks to all for the prayers. We need them now more than ever.
Love,
Greg, Ann & the Boys
Greg is doing well. He's very tired (who isnt?) and he's getting something or other at the clinic or hospital almost every day now. Here's the scoop:
When we went to see Dr. Vij way back on April 3, he expressed his concern (echoing ours) that Greg has had way too many transfusions, hospitalizations and infections over the past several months. This was really no surprise. He said its time to proceed with the allogeneic transplant -- which we were hoping to put off for a while. The last biopsy showed really no change to his multiple myeloma, but the myelodisplastic syndrome is progressing faster than Vij would like.
Dr. Vij spent about 40 minutes scaring the you-know-what out of us, talking about the dangers, pitfalls and risks involved (I'm sure his lawyers made him do it!). Basically, Greg could come through this with flying colors, as he has done with the autologous transplants, or he could be in real trouble real fast. There is absolutely no way to tell.
The transplant will proceed at the beginning just like the others, with about a 3 week hospital stay. He will receive high dose chemotherapy and full body radiation to kill off every last cell of bone marrow he has (he didn't get the radiation with the others). Then, he'll receive the donor cells. (BTW, it will take about 2-3 months to get the donor lined up, mobilize his/her cells, collect, freeze and transport to St. Louis. They're working on that now). Assuming all goes well, he could be out of the hospital in about 3 weeks, but then must stay, as an outpatient in St. Louis, for 3 to 4 months (!). Complications can arise from the usual: infections and bleeing, and also from graft versus host disease (the new cells attack his body) or the reverse (his body attacks the new cells). He can have skin, liver, intestinal and a whole host of other problems. Or not. How's that for definite? But, as Greg sees it, he really doesn't have any choice. And that, believe it or not, actually makes this easier. We're not sitting here agonizing over what to do, what treatment option to pick, etc. This is the only one. At least he won't be left second guessing later on. Greg simply cannot go on the way he has been. Its too dangerous, not to mention his quality of life pretty much sucks.
In the meantime, Dr. Vij has started Greg on Velcade, a twice a week IV drug to try to limp him along until the transplant (Greg was part of a clinical trial on Velcade back in 2003). He's not too hopeful it will have much effect on the disease, but its worth a try. He gets that here in Springfield. However, the side effect of Velcade is that it lowers your counts -- you know, the ones he doesn't have to begin with. That's why he's getting red blood and plateletes several times a week. He's also trying to still work as close to full time as possible. Everyone in his office has been so supportive and caring -- he wouldn't be getting through this without all of them, too.
However, there is actually a small bright spot in all of this: because he's getting active "treatment" via the Velcade, he can get shots of Neupagin -- a drug designed to raise his white counts. State/insurance guidelines say he can only get the drug if he's getting treatment. So, his white count is actually up some (last week it was through the roof!), lowering significantly his risk for infection. Doesn't seem to make sense. The last five months he couldn't have the shot ($1,000 a pop -- less than the cost of an ambulance ride to St. Louis!), so the insurance company had to pay for four hospitalizations instead -- two of them out of state! Even I can do that math.
Another bright spot (not!) of the Velcade is that it comes with a high dose of steroid -- whick really messes up his blood sugar. So, he has to check that regularly, and is on insulin. And, another side effect of the steroids is being just a wee bit grumpy. Ok, unbearably grumpy sometimes. However, because of Greg's blood sugar issues, they've got him on the lowest possible dose, and that has not really been an issue so far. Here's hoping! We went through this in 2003 and I almost had to throw him out. He's planning to join the WWE if the steroids continue.
So, I think that's about everything. We go back in May to see Vij, and should get a better idea on timing. I'll post again then, and in between if anything exciting happens (but it better not!).
Thanks to all for the prayers. We need them now more than ever.
Love,
Greg, Ann & the Boys
Wednesday, April 8, 2009
Catching Up
OK, so this is wayyyyyyy overdue. I apologize for not blogging in so long, but things have been a little crazy.
When we last left Our Hero, we were about to embark on our trip to Disney World, via an overnight stay in Cocoa Beach. Our expectations were high. Too high. Things kinda went south (no pun intended) in a hurry. The short version: Greg spent most of our vacation in an Orlando hospital.
We drove straight through to the beach and stayed there Saturday night. (We stopped in Memphis for dinner Friday night & ate at the Neely's -- I had BBQ spaghetti & highly recommend it!) This was 3/21. Thank God for Eric -- he did a lot of driving and did a great job. The beach there was not too great. The sand wasn't the nice, white sand that we're used to in Daytona and the Gulf. And the wind was terrible! Gale force off the Atlantic. But, that's the chance you take when you go to the beach in March, and we made the most of it. Built sand castles, collected shells & even went into the water a little (it was pretty cold!).
Sunday we went to Orlando & checked in at Disney. If I were writing this in real time, I'd have a lot more detail, but as its so long after the fact, I'll just give you the highlights. Met up with Sadie, Skibby & Don & had a great dinner Sunday night, and our Pirate-themed room was pretty fun. Monday morning we had our character breakfast and hung around the Magic Kingdom. Greg left after breakfast to find a place to get his lab values checked. He went to a local hospital, only to find out the Orders sent from St. Louis had never been signed by a doctor. So, it took all day to get that straightened out. Later that day, he got a call that he needed plateletes, so he went back to the hospital. That's when the real fun began. They wouldn't give him the plateletes without admitting him for a MINIMUM of 23 hours. No guarantee as to when they would actually let him go. We spent a couple of hours trying to get that straightened out (even calling Barnes & having the doctor there call the Florida doc to try to get them to give him his stuff outpatient) all to no avail. So, Greg left AMA.
Tuesday, he wakes up & feels really tired. He sent us on to the parks and said he would try to get someone else to give him his plateletes. We figured at that point he probably needed red blood cells, too. He finally found one place that would give him his stuff outpatient -- in two weeks IF he brought them all of his medical records!
He spent the rest of Tuesday sleeping. That should have been a clue, but I was being Cleopatra, Queen of Denial at that point. It wasn't until Wednesday a.m. that I figured I'd better take his temp. True to form, he was at 103 +. I took him to a local hospital & sent the boys on to the parks. Luckily, Greg's sister had scoped out local hospitals beforehand, and I had a borrowed Garmin. I took him to an MD Anderson Cancer Center in Orlando (at least we learned SOMETHING from the KC disaster). He was really a sick puppy at that point. His fever was still 103+, and he was septic -- meaning he was spilling infectious stuff into his bloodstream -- really serious.
To make a long story short, I basically had a nervous breakdown on Wednesday, but I got better. So did Greg. By Thursday evening he was A LOT better, and we salvaged our vacation as best we could for the boys. Skibby, Don & Sadie were there until Saturday, which was a huge help. We never did get an official diagnosis out of the infectious disease guys -- one doctor said pneumonia & another said GI. (The pneumonia guy had the hairiest knuckles I've ever seen. The GI guy I was calling "Dr. Hunka Hunka Burnin' Love" -- he was gorgeous!) But, he did get excellent care & said that this is the first hospital he's been in (and there have been plenty!) outside of Barnes in St. Louis where they "get it." The hardest part was getting him discharged. It wasn't until the following Tuesday evening. We drove straight home (not the smartest thing we ever did) and got home late Wednesday. So, for all his efforts, Greg got a total of 4 hours in the Magic Kingdom, and that was it.
Did I mention Matthew got carsick on the way home? Twice? (Note to self: when a kid throws up once, do not, repeat, DO NOT go to the nearest McDonald's & fill him back up again -- especially with orange soda & a shamrock shake.). It was not pretty.
Special thanks to Eric for being the most fantastic big brother in the whole world. He took Matthew on all the 'mountains' -- Space, Splash & Big Thunder. Matthew loved them all -- even if we did have to fudge the height requirements a little.
Eric also reached a milestone on this trip. Not only did he drive his parents home from their Florida vacation, he also drove his dad home from the hospital.
I'll write more later. We got home Wednesday, went to work Thursday & went to St. Louis Friday. I'll post in a day or two with what happened there.
Thanks to all!
Love,
The Weary Travellers
P.S. I'm going to write a Michelin Guide to hospitals. I already have a good start.
P.P.S. However this may not be easy, as I'm never going anywhere again.
When we last left Our Hero, we were about to embark on our trip to Disney World, via an overnight stay in Cocoa Beach. Our expectations were high. Too high. Things kinda went south (no pun intended) in a hurry. The short version: Greg spent most of our vacation in an Orlando hospital.
We drove straight through to the beach and stayed there Saturday night. (We stopped in Memphis for dinner Friday night & ate at the Neely's -- I had BBQ spaghetti & highly recommend it!) This was 3/21. Thank God for Eric -- he did a lot of driving and did a great job. The beach there was not too great. The sand wasn't the nice, white sand that we're used to in Daytona and the Gulf. And the wind was terrible! Gale force off the Atlantic. But, that's the chance you take when you go to the beach in March, and we made the most of it. Built sand castles, collected shells & even went into the water a little (it was pretty cold!).
Sunday we went to Orlando & checked in at Disney. If I were writing this in real time, I'd have a lot more detail, but as its so long after the fact, I'll just give you the highlights. Met up with Sadie, Skibby & Don & had a great dinner Sunday night, and our Pirate-themed room was pretty fun. Monday morning we had our character breakfast and hung around the Magic Kingdom. Greg left after breakfast to find a place to get his lab values checked. He went to a local hospital, only to find out the Orders sent from St. Louis had never been signed by a doctor. So, it took all day to get that straightened out. Later that day, he got a call that he needed plateletes, so he went back to the hospital. That's when the real fun began. They wouldn't give him the plateletes without admitting him for a MINIMUM of 23 hours. No guarantee as to when they would actually let him go. We spent a couple of hours trying to get that straightened out (even calling Barnes & having the doctor there call the Florida doc to try to get them to give him his stuff outpatient) all to no avail. So, Greg left AMA.
Tuesday, he wakes up & feels really tired. He sent us on to the parks and said he would try to get someone else to give him his plateletes. We figured at that point he probably needed red blood cells, too. He finally found one place that would give him his stuff outpatient -- in two weeks IF he brought them all of his medical records!
He spent the rest of Tuesday sleeping. That should have been a clue, but I was being Cleopatra, Queen of Denial at that point. It wasn't until Wednesday a.m. that I figured I'd better take his temp. True to form, he was at 103 +. I took him to a local hospital & sent the boys on to the parks. Luckily, Greg's sister had scoped out local hospitals beforehand, and I had a borrowed Garmin. I took him to an MD Anderson Cancer Center in Orlando (at least we learned SOMETHING from the KC disaster). He was really a sick puppy at that point. His fever was still 103+, and he was septic -- meaning he was spilling infectious stuff into his bloodstream -- really serious.
To make a long story short, I basically had a nervous breakdown on Wednesday, but I got better. So did Greg. By Thursday evening he was A LOT better, and we salvaged our vacation as best we could for the boys. Skibby, Don & Sadie were there until Saturday, which was a huge help. We never did get an official diagnosis out of the infectious disease guys -- one doctor said pneumonia & another said GI. (The pneumonia guy had the hairiest knuckles I've ever seen. The GI guy I was calling "Dr. Hunka Hunka Burnin' Love" -- he was gorgeous!) But, he did get excellent care & said that this is the first hospital he's been in (and there have been plenty!) outside of Barnes in St. Louis where they "get it." The hardest part was getting him discharged. It wasn't until the following Tuesday evening. We drove straight home (not the smartest thing we ever did) and got home late Wednesday. So, for all his efforts, Greg got a total of 4 hours in the Magic Kingdom, and that was it.
Did I mention Matthew got carsick on the way home? Twice? (Note to self: when a kid throws up once, do not, repeat, DO NOT go to the nearest McDonald's & fill him back up again -- especially with orange soda & a shamrock shake.). It was not pretty.
Special thanks to Eric for being the most fantastic big brother in the whole world. He took Matthew on all the 'mountains' -- Space, Splash & Big Thunder. Matthew loved them all -- even if we did have to fudge the height requirements a little.
Eric also reached a milestone on this trip. Not only did he drive his parents home from their Florida vacation, he also drove his dad home from the hospital.
I'll write more later. We got home Wednesday, went to work Thursday & went to St. Louis Friday. I'll post in a day or two with what happened there.
Thanks to all!
Love,
The Weary Travellers
P.S. I'm going to write a Michelin Guide to hospitals. I already have a good start.
P.P.S. However this may not be easy, as I'm never going anywhere again.
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