Greg got discharged yesterday. I went to pick him up & we got home last night. This morning he gets to run around with the doctors here.
They're also getting him set up so he can have his blood drawn while we're at DisneyWorld. He'll get his labs checked twice there (how does Mickey draw blood when he only has four fingers?) and if he needs to get transfused while there, he can. Then, we go to see Dr. Vij in St. Louis when we get back. No test results until then, probably.
Its nice to have him home. Thanks to all who helped out. Once again, I couldn't do this without you!
Love,
Us
Wednesday, March 18, 2009
Monday, March 16, 2009
Odds 'n Ends
Nothing much new to report, except the steroid gives Greg "night sweats." Anyone who's ever been through menopause knows what I'm talking about. He had to change clothes and bedding 3 times Saturday night. He says they were better last night.
He's having his PET scan done this week (the one they couldn't do on 3/6 because they screwed up & didn't tell him to stop his medication). Might as well, as long as he's there.
I got home last night. The boys were glad to see me, espcially since I brought ice cream (true, a little bribery never hurts!). AND, I know you'll be impressed: after I fold the 497 towels that are in my dryer, I will have caught up with the laundry! Unfortunately, that only holds for about 48 hours around my house.
Note: If you're ever in the hospital and want to see the doctor right away, just refuse your medication. Works like a charm. This morning, Greg refused the aspirin they tried to give him, as he hasn't started on the Revlimid and the aspirin is to combat the side effects of that. The doc was in within minutes. Got all of our questions answered! Something to keep in mind, if you ever need it.
Dr. DiPersio came in again last night to see Greg. We realized we only ever see him after dark. AND, he works in hematology (BLOOD cancers). Coincidence? I hope so, but think not.....Wasn't able to see if he has fangs or not.
Won't get test results for a few days. PLEASE keep up the prayers (I know you are!). Its probably kind of greedy, but if you could, please ask the Big Guy to let Greg go to Disney at the end of the week. The whole family has been looking forward to it for months. (Oh, and its pre-paid!).
Thats all for now. Will keep you "posted" as always!
Love,
Ann
P.S. Since he started the steroid, his body temp has been 96 point whatever. Too bad we had to waste all that time in Kansas.
Oh, and Sunday morning, as I walked down the hall just on one side (there's two), I noticed 3 empty rooms. Its all about timing. Sigh.
He's having his PET scan done this week (the one they couldn't do on 3/6 because they screwed up & didn't tell him to stop his medication). Might as well, as long as he's there.
I got home last night. The boys were glad to see me, espcially since I brought ice cream (true, a little bribery never hurts!). AND, I know you'll be impressed: after I fold the 497 towels that are in my dryer, I will have caught up with the laundry! Unfortunately, that only holds for about 48 hours around my house.
Note: If you're ever in the hospital and want to see the doctor right away, just refuse your medication. Works like a charm. This morning, Greg refused the aspirin they tried to give him, as he hasn't started on the Revlimid and the aspirin is to combat the side effects of that. The doc was in within minutes. Got all of our questions answered! Something to keep in mind, if you ever need it.
Dr. DiPersio came in again last night to see Greg. We realized we only ever see him after dark. AND, he works in hematology (BLOOD cancers). Coincidence? I hope so, but think not.....Wasn't able to see if he has fangs or not.
Won't get test results for a few days. PLEASE keep up the prayers (I know you are!). Its probably kind of greedy, but if you could, please ask the Big Guy to let Greg go to Disney at the end of the week. The whole family has been looking forward to it for months. (Oh, and its pre-paid!).
Thats all for now. Will keep you "posted" as always!
Love,
Ann
P.S. Since he started the steroid, his body temp has been 96 point whatever. Too bad we had to waste all that time in Kansas.
Oh, and Sunday morning, as I walked down the hall just on one side (there's two), I noticed 3 empty rooms. Its all about timing. Sigh.
Saturday, March 14, 2009
We Have A Diagnosis
Dr. DiPersio (who is the hospital equivalent of Dr. Vij) just left a little while ago. We have a diagnosis that he’s pretty sure of, and we’re not too thrilled with.
His theory (and, as he told us several times, he knows everything) is that this is not an infection at all. He believes that this is either the Myeloma running rampant (unlikely) or the MDS (much more likely). Either would cause persistent fevers. If it’s the MDS, its also very likely this has progressed to Leukemia. We knew this day was coming – we just didn’t think it would come so quickly.
Needless to say, Greg is probably in very serious trouble.
Here’s the plan for now: He’s off the antibiotics. They added a steroid (for the fever), and on Monday (due to pharmacy issues), he’ll start Revlimid, a newer drug to treat the cancer. Along with Revlimid, he gets a baby aspirin, because, even with low plateletes, there’s a significant chance of blood clots. Revlimid is a close cousin of Thalomid (or thalidomide), which he’s had in the past and failed on. Only 30 percent of people who failed on Thalomid have success with Revlimid. Not very good odds, but its all we’ve got. He will get a bone marrow biopsy on Monday to confirm the diagnosis, although we won’t get results until probably Thursday.
Right now, we have no idea if DisneyWorld is still in the works for Greg. We're supposed to leave Friday. He wants me to take the kids regardless. We'll re-assess as the week goes on.
His theory (and, as he told us several times, he knows everything) is that this is not an infection at all. He believes that this is either the Myeloma running rampant (unlikely) or the MDS (much more likely). Either would cause persistent fevers. If it’s the MDS, its also very likely this has progressed to Leukemia. We knew this day was coming – we just didn’t think it would come so quickly.
Needless to say, Greg is probably in very serious trouble.
Here’s the plan for now: He’s off the antibiotics. They added a steroid (for the fever), and on Monday (due to pharmacy issues), he’ll start Revlimid, a newer drug to treat the cancer. Along with Revlimid, he gets a baby aspirin, because, even with low plateletes, there’s a significant chance of blood clots. Revlimid is a close cousin of Thalomid (or thalidomide), which he’s had in the past and failed on. Only 30 percent of people who failed on Thalomid have success with Revlimid. Not very good odds, but its all we’ve got. He will get a bone marrow biopsy on Monday to confirm the diagnosis, although we won’t get results until probably Thursday.
Right now, we have no idea if DisneyWorld is still in the works for Greg. We're supposed to leave Friday. He wants me to take the kids regardless. We'll re-assess as the week goes on.
Friday, March 13, 2009
Toto, I Don't Think We're in Kansas Anymore!
In other words, he's off to see the Wizard (I'll leave the Ruby Slippers jokes to the rest of you). He got the call at 10:45 last night that there is a bed in St. Louis. The ambulance arrived about 8:30 this morning to take him. That should only cost about 4 grand.
Francis: Loved your video link. I think I have a crush on all 4 of those guys! Great idea to turn it into a musical, as Greg's singing talent is legend. Maybe we could bring in Andrew Lloyd Webber and turn it into an opera?
Judy: You are sleeping on the ironing board when you are here. (The comparison to Meryl Streep was NOT enough to save you!).
Well, yesterday Dr. YaYa SureSure and the rest of the Kansas Krew decided to do a CT scan. The only useful information gleaned from that is that he has gall stones (don't we all?). A-Sypmtomatic gall stones. I really don't think that's the problem here! Then, they decided that maybe they should remove his port, as that can sometimes be a cause of infection. Great idea! Let's perform surgery on the guy with no plateletes! Brilliant! (Don't worry -- they didn't. Seems he got out of there just in the nick of time).
His fever is still hovering around 100 point something, so the 48 hour clock has not been re-set yet, so keep praying. However, in a few hours he will be in MUCH better hands.
I'm going up tonight to spend the weekend. I'll have Internet access there, too. So, I'll post more when I know something.
Oh, and Eric is NOT named after Hoss Cartwright! Judy is smoking crack again.
Love,
Ann
Thanks for all the prayers! They must be working!
Francis: Loved your video link. I think I have a crush on all 4 of those guys! Great idea to turn it into a musical, as Greg's singing talent is legend. Maybe we could bring in Andrew Lloyd Webber and turn it into an opera?
Judy: You are sleeping on the ironing board when you are here. (The comparison to Meryl Streep was NOT enough to save you!).
Well, yesterday Dr. YaYa SureSure and the rest of the Kansas Krew decided to do a CT scan. The only useful information gleaned from that is that he has gall stones (don't we all?). A-Sypmtomatic gall stones. I really don't think that's the problem here! Then, they decided that maybe they should remove his port, as that can sometimes be a cause of infection. Great idea! Let's perform surgery on the guy with no plateletes! Brilliant! (Don't worry -- they didn't. Seems he got out of there just in the nick of time).
His fever is still hovering around 100 point something, so the 48 hour clock has not been re-set yet, so keep praying. However, in a few hours he will be in MUCH better hands.
I'm going up tonight to spend the weekend. I'll have Internet access there, too. So, I'll post more when I know something.
Oh, and Eric is NOT named after Hoss Cartwright! Judy is smoking crack again.
Love,
Ann
Thanks for all the prayers! They must be working!
Thursday, March 12, 2009
I'm Losing MY Marbles
OK, I haven't posted in a loooooong time and now I have to catch everyone up. I'll try to give you all the Reader's Digest version, but things are pretty crazy around here. Bottom line for those of you who don't yet know: Greg's been in the hospital since Saturday with an "infection of unknown origin." But, more on that later.
First, while we were on our way to St. Louis Friday for his regularly scheduled visit, his internist called about the dizzy thing. Seems he's NOT losing his marbles. The heart monitor found 2 episodes of tachycardia. Seems that, coupled with low hemoglobin = dizzy spells. So, he called in a prescription for a simple beta blocker, which should take care of the problem. So far, so good.
Then, we saw Dr. Vij (the hematologist) for his regular visit. Bottom line: His labs still suck, may be getting a little worse, but we don't want to be in a huge hairy hurry to do the allogeneic transplant because its so risky. In reality, he could die from the procedure. He says there's a little bit of art and a little bit of science involved, and at some point he's going to have to make a decision to go ahead, but we're not there now. We go back in 2 months. They are looking for a "Matched Unrelated Donor" or "MUD" (I didn't make that up), and have a few who match 7 out of 8 markers. That's enough to go ahead, but still risky. He'd like to find a donor who is 8 out of 8, as that's almost as good as a sibling match. Thanks to all who've registered! Maybe you're one of the 7/8!
This is where all the wheels start to come off.
Then, we went downstairs for his PET and CT scans. True to form, no one told Greg to stop taking his blood sugar medications, so they can't do the tests. The contrast dyes they use are all sugar & in combination with the meds could put him into a coma (I've probably got the details wrong, but its something like that). Matthew was VERY disappointed because I was going to take him to the zoo while Dad had the test done (it takes 3 hours). But, as we had other fun things planned for the weekend in KC, I managed to get his tears under control. Alas, it was not to be.
So, off to KC to watch Eric's playoff hockey game. It was a 4 hour trip, and we wouldn't have gotten to see the game if they had run the tests, so we were counting ourselves lucky at this point. We got there in time, and Eric and his whole team played great! Probably everyone's best game of the season. And, they won, which meant they get to play Rockhurst Saturday morning. We were pretty excited. Rockhurst is REALLY good!
We got back to our hotel about 9 Friday night, and Greg was really cold. At first, we thought it was just from being in the ice rink, but no such luck. I took his temp (I now carry around my own thermometer) and it was 102. He had a rotten night of no sleep, and in the morning it was 103. Going in the wrong direction!
So, I do what I'm supposed to do, and call Barnes hospital in St. Louis and ask to speak to the BMT fellow on call. He calls me back, and after I explain where we are and where we live, he tells me its too far to bring him directly there. He says to take him to the nearest ER, have him evaluated, and they will arrange transport to St. Louis to have him admitted there. Thus our long national (or at least interstate) nightmare begins......
The nearest hospital is in Overland Park, Kansas (a suburb). I tell them his history and his symptoms (cancer, 2 stem cell transplants, history of infections, particularly pneumonia, MDS, low lab counts, high fever, etc.). So naturally, they think he's having a heart attack! Seriously! Seems this hospital is big on cardiac stuff, and doesn't even have an oncology department, so I suppose it made sense to them. I won't go into all the horrid details, but here's the highlights: His plateletes were at 7 (!) They are supposed to be around 140. So, they gave him aspirin! He was having discomfort in his chest when he took a deep breath, so they gave him a nitro patch. I'm not making any of this up. They filled him with IV fluids in the 7 hours we were in ER, so when they finally admitted him to a room (on the cardiac care unit!), the doctor felt his ankles and said he might be having congestive heart failure. I pointed out that his ankles were just fine when I brought him in. She didn't listen (to anything I said). I never did catch her name, but I just call her Dr. YaYa SureSure. That's all she said the whole time I was talking, and then she ignored everything I said. Seems Barnes didn't have a bed available. So, we were (and still are) at their mercy until one was available and they could arrange for transport.
So, its now Thursday afternoon, and Barnes STILL says they don't have a bed. (I guarantee that if I had brought him to their ER, they'd have found him a bed.). Sometime Monday the cardiologist who they brought in came into the room, hat in hand (figuratively) and very sheepishly told us that, after blowing through most of his insurance money running unnecessary tests, his heart checks out just fine! Gee, we only told them that Saturday. But what do we know? And I didn't even stay at a Holiday Inn Express last night.
I came home Tuesday night, as Greg was feeling a little better. So, I'm in Springfield, and Greg is still stuck in Kansas. He was getting better, and his fevers were around 100 to 101. However, last night he hit 103 again, and appears to be holding there. He's even had some periods yesterday where he was normal (as if anything about this were normal). If he can go fever free for 24 hours with antibiotics, and another 24 without antibiotics, he can go home. Unfortunately, our 48 hour clock keeps getting reset.
I personally called Barnes yesterday and pitched a hissy fit -- but it did no good. There's no room at the inn. While I don't necessarily believe that, there's not a darn thing I can do about it. So we wait......
There's tons more I can tell you all, but I'll save it for the made-for-TV miniseries. Anyone have any suggestions on who should be cast? I'm thinking maybe Angelina Jolie as me, just because the physical resemblance is so close. Perhaps Russell Crowe or Daniel Craig as Greg, for the same reasons, but we're open to suggestions.
Don't even get me started on the lack of support and services for patient's family members, or the food in the cafeteria at this hospital.
I'll post again tomorrow with an update, as I now have Internet access. I had my laptop with me all weekend, but my firewall wouldn't let me access their system.
Greg is asking that the telephone calls be kept to a minimum, as he's trying to get as much sleep as he can, and I'm not there to answer for him. And, the button on his phone that turns the ringer down is broken.
Keep praying, please! And if you need something specific to ask for, how about a bed at Barnes?
And I would be terribly remiss if I didn't thank all of you, but especially the Altoonians for transporting and taking care of the boys this past weekend; Kris and Caitlin Wherley for taking Matthew swimming Saturday morning at the hotel; and the Connors for taking care of Matthew Monday & Tuesday. Everyone's support is so important to us. Its allowed me to put off my complete nervous breakdown for at least another day. I checked with my secretary -- she says I don't have time for one until a week from next Wednesday anyway.
Tons of thanks to all.
Love,
Greg, Ann, Eric & Matthew
P.S. We lost to Rockhurst, but we're told out boys played a GREAT game & left the ice with smiles on their faces. We ended up 3rd overall, and Rockhurst won the championship. A great end to the season.
First, while we were on our way to St. Louis Friday for his regularly scheduled visit, his internist called about the dizzy thing. Seems he's NOT losing his marbles. The heart monitor found 2 episodes of tachycardia. Seems that, coupled with low hemoglobin = dizzy spells. So, he called in a prescription for a simple beta blocker, which should take care of the problem. So far, so good.
Then, we saw Dr. Vij (the hematologist) for his regular visit. Bottom line: His labs still suck, may be getting a little worse, but we don't want to be in a huge hairy hurry to do the allogeneic transplant because its so risky. In reality, he could die from the procedure. He says there's a little bit of art and a little bit of science involved, and at some point he's going to have to make a decision to go ahead, but we're not there now. We go back in 2 months. They are looking for a "Matched Unrelated Donor" or "MUD" (I didn't make that up), and have a few who match 7 out of 8 markers. That's enough to go ahead, but still risky. He'd like to find a donor who is 8 out of 8, as that's almost as good as a sibling match. Thanks to all who've registered! Maybe you're one of the 7/8!
This is where all the wheels start to come off.
Then, we went downstairs for his PET and CT scans. True to form, no one told Greg to stop taking his blood sugar medications, so they can't do the tests. The contrast dyes they use are all sugar & in combination with the meds could put him into a coma (I've probably got the details wrong, but its something like that). Matthew was VERY disappointed because I was going to take him to the zoo while Dad had the test done (it takes 3 hours). But, as we had other fun things planned for the weekend in KC, I managed to get his tears under control. Alas, it was not to be.
So, off to KC to watch Eric's playoff hockey game. It was a 4 hour trip, and we wouldn't have gotten to see the game if they had run the tests, so we were counting ourselves lucky at this point. We got there in time, and Eric and his whole team played great! Probably everyone's best game of the season. And, they won, which meant they get to play Rockhurst Saturday morning. We were pretty excited. Rockhurst is REALLY good!
We got back to our hotel about 9 Friday night, and Greg was really cold. At first, we thought it was just from being in the ice rink, but no such luck. I took his temp (I now carry around my own thermometer) and it was 102. He had a rotten night of no sleep, and in the morning it was 103. Going in the wrong direction!
So, I do what I'm supposed to do, and call Barnes hospital in St. Louis and ask to speak to the BMT fellow on call. He calls me back, and after I explain where we are and where we live, he tells me its too far to bring him directly there. He says to take him to the nearest ER, have him evaluated, and they will arrange transport to St. Louis to have him admitted there. Thus our long national (or at least interstate) nightmare begins......
The nearest hospital is in Overland Park, Kansas (a suburb). I tell them his history and his symptoms (cancer, 2 stem cell transplants, history of infections, particularly pneumonia, MDS, low lab counts, high fever, etc.). So naturally, they think he's having a heart attack! Seriously! Seems this hospital is big on cardiac stuff, and doesn't even have an oncology department, so I suppose it made sense to them. I won't go into all the horrid details, but here's the highlights: His plateletes were at 7 (!) They are supposed to be around 140. So, they gave him aspirin! He was having discomfort in his chest when he took a deep breath, so they gave him a nitro patch. I'm not making any of this up. They filled him with IV fluids in the 7 hours we were in ER, so when they finally admitted him to a room (on the cardiac care unit!), the doctor felt his ankles and said he might be having congestive heart failure. I pointed out that his ankles were just fine when I brought him in. She didn't listen (to anything I said). I never did catch her name, but I just call her Dr. YaYa SureSure. That's all she said the whole time I was talking, and then she ignored everything I said. Seems Barnes didn't have a bed available. So, we were (and still are) at their mercy until one was available and they could arrange for transport.
So, its now Thursday afternoon, and Barnes STILL says they don't have a bed. (I guarantee that if I had brought him to their ER, they'd have found him a bed.). Sometime Monday the cardiologist who they brought in came into the room, hat in hand (figuratively) and very sheepishly told us that, after blowing through most of his insurance money running unnecessary tests, his heart checks out just fine! Gee, we only told them that Saturday. But what do we know? And I didn't even stay at a Holiday Inn Express last night.
I came home Tuesday night, as Greg was feeling a little better. So, I'm in Springfield, and Greg is still stuck in Kansas. He was getting better, and his fevers were around 100 to 101. However, last night he hit 103 again, and appears to be holding there. He's even had some periods yesterday where he was normal (as if anything about this were normal). If he can go fever free for 24 hours with antibiotics, and another 24 without antibiotics, he can go home. Unfortunately, our 48 hour clock keeps getting reset.
I personally called Barnes yesterday and pitched a hissy fit -- but it did no good. There's no room at the inn. While I don't necessarily believe that, there's not a darn thing I can do about it. So we wait......
There's tons more I can tell you all, but I'll save it for the made-for-TV miniseries. Anyone have any suggestions on who should be cast? I'm thinking maybe Angelina Jolie as me, just because the physical resemblance is so close. Perhaps Russell Crowe or Daniel Craig as Greg, for the same reasons, but we're open to suggestions.
Don't even get me started on the lack of support and services for patient's family members, or the food in the cafeteria at this hospital.
I'll post again tomorrow with an update, as I now have Internet access. I had my laptop with me all weekend, but my firewall wouldn't let me access their system.
Greg is asking that the telephone calls be kept to a minimum, as he's trying to get as much sleep as he can, and I'm not there to answer for him. And, the button on his phone that turns the ringer down is broken.
Keep praying, please! And if you need something specific to ask for, how about a bed at Barnes?
And I would be terribly remiss if I didn't thank all of you, but especially the Altoonians for transporting and taking care of the boys this past weekend; Kris and Caitlin Wherley for taking Matthew swimming Saturday morning at the hotel; and the Connors for taking care of Matthew Monday & Tuesday. Everyone's support is so important to us. Its allowed me to put off my complete nervous breakdown for at least another day. I checked with my secretary -- she says I don't have time for one until a week from next Wednesday anyway.
Tons of thanks to all.
Love,
Greg, Ann, Eric & Matthew
P.S. We lost to Rockhurst, but we're told out boys played a GREAT game & left the ice with smiles on their faces. We ended up 3rd overall, and Rockhurst won the championship. A great end to the season.
Thursday, March 5, 2009
He's Losing his Marbles
Well, we've had kind of an exciting week around here. Since last Friday, Greg has had 3 pretty scary "dizzy spells." Two were when he was seated & one was when he was standing. He almost fell over. He describes it as the entire room spinning. I won't go into all the sordid details about our interactions with the doctors, but since he had labs scheduled for Tuesday, we tried to get the Oncologist (local) to take a look at it (thinking maybe it had to do with low reds, hence not enough oxygen circulating). After getting the run-around all day, her response was pretty much "its not my department." So, we called his primary physician (who we probably should have called first) and finally got to see him yesterday.
He put Greg on a 24 hour heart monitor (just to rule that out) and thinks its an inner ear problem. Evidently, in your ear you have these hairs that have little rocks (or marbles) hanging down -- 4 in each ear. Sometimes one can fall off, causing your equilbrium to go completely haywire. Dr. Atwood is pretty sure this is the problem. Its more common in older people, but since Greg has had so much chemo and radiation, he said its caused some "premature aging." If it happens again, he's going to put Greg on low-dose valium (I hope he brings enough for EVERYBODY!) and that should clear up the problem.
In the meantime, I'm the designated driver.
We go to St. Louis tomorrow to see Dr. Vij. Hopefully we'll get some news about the transplant, and he gets a PET scan and a CAT scan. Then, we race over to KC for Eric's playoff game. The last weekend of hockey this season.
Sometimes, I think I'm losing my marbles, too.
He put Greg on a 24 hour heart monitor (just to rule that out) and thinks its an inner ear problem. Evidently, in your ear you have these hairs that have little rocks (or marbles) hanging down -- 4 in each ear. Sometimes one can fall off, causing your equilbrium to go completely haywire. Dr. Atwood is pretty sure this is the problem. Its more common in older people, but since Greg has had so much chemo and radiation, he said its caused some "premature aging." If it happens again, he's going to put Greg on low-dose valium (I hope he brings enough for EVERYBODY!) and that should clear up the problem.
In the meantime, I'm the designated driver.
We go to St. Louis tomorrow to see Dr. Vij. Hopefully we'll get some news about the transplant, and he gets a PET scan and a CAT scan. Then, we race over to KC for Eric's playoff game. The last weekend of hockey this season.
Sometimes, I think I'm losing my marbles, too.
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