Things are finally settling down. Went in for blood work, doc visit & bone marrow biopsy on Tuesday. Lab results came back with my red counts down (running on fumes), only thing that is close to normal is the white cells. Exam showed my spleen was huge and hard (not a good thing). Doc said he felt sad since it's been several weeks since eshap (heavy dose chemo) and I should not be needing so many transfusions. That means the eshap doesn't seem to be doing the job. Once you've gone through 2 different chemical treatments and there is still stuff left the options get more glum. Down (if you go with percentages) I went down to 5% or less survival. He did get a good chunk of marrow sample, but even if we do well in the 'no/less than' amount of cancer cells in the sample it may not matter. In other words, gang, outlook becoming more bleak.
Of course my 'sense of humor', etc., has not been the best .. very tired and wobbly legs .. have kept me in the dumps.
Anyway (darn .... having trouble getting used to this keyboard) doctor wanted me to get 3 Units of blood but it was too late to get anything started and the next day all the chairs were booked. Very busy place (only treatment center from Seattle to Montana ). The nurses were very concerned (one even said she was thinking about me at home) and got together to get me in for at least 2 that next day and then the last one. When I called with a question the nurse said come in as soon as I can and they 'would find me a bed' and pump in all 3 the same day! Wow talk about nursing care!! These ladies are real go getter's and earn every penny they get (and should get a lot more!).
Wednesday guardian angel Paige picked me up and we got upstairs and within 10 minutes we had me settled in my bed and premeds going in. Finished at 5:45 (they close at 6). After the first unit started going in I started feeling much much much better. Think the first round pumped up my humor level 'cause I started joking around again (sure missed that!). Doc stopped by and I haven't seen him in such a good joking mood in quite a while. Of course that put me in an even better mood too. He said I looked very much better than the day before. We had a good chat (some times I think he gets into that better mood when he kinda of has a handle on what he wants to do next). He wants me to get a pet scan tomorrow (Friday) .. hopefully they will be able to schedule it that soon. I'll be calling throughout the day to 'urge' them on. Just spoke to Gloria who does the insurance 'okay' and she sounded as though she hadn't even seen it yet. So I told her what the doc said and suggest she run it past him and then get back to me. I'll have to try to remember to call her back later in the afternoon if I haven't heard from her.
When we got back home my computer was over at the neighbors. She saw FEDEX man and said 'I can take that for the neighbors'. He looked a little strange at her, but then she said ... the note was on the front door that it was okay.
Jim waited as long as he could and then said he wanted to see if it booted up OK. I, of course, was NOT ready (could feel the transfusion tiredness coming on), but said I'd do it. Of course somewhere I screwed up installing something and he ended up 'fixing' it until around 1AM. Needless to say he got as much done as he could. I thought I'd give it a try and voila it works. Now all I have to do is get used to this keyboard (fingers always over one key too far). Think I'm going to load stuff nice and slow.
Thursday, January 29, 2009
Sunday, January 25, 2009
I truly appoligize
Sorry about the delay in updating the blog. Have had a bad couple of weeks. Nice visit, wish I could have enjoyed it more, but I'm at the stage where I'm grateful for what I can get. Back really hurts. Pain meds help, but make me sleep, which means I don't eat or drink or pee. Poor Jim doesn't get much sleep any more. Almost really looking forward to going into hospital so they can dope me up.
Not only did 'shit hit the fan' during the week, but my laptop video card died. Jim the sweetie ordered me a new one (RED!!!), still 'being built' so don't know when delivery date is. That should keep me busy loading all the software to get back to square one.
Love to all
Not only did 'shit hit the fan' during the week, but my laptop video card died. Jim the sweetie ordered me a new one (RED!!!), still 'being built' so don't know when delivery date is. That should keep me busy loading all the software to get back to square one.
Love to all
Thursday, January 15, 2009
Sorry for the delay
Oh dear, didn't realize it's been this long since I update the blog.
Monday was okay, just a tired achey day. Nice not having to go in for medical stuff. Back ache, trying to drink more fluids (yes Dianne I've been a ''naughty" girl, but I'm getting better). Tylenol got me through the day (only needed to take it in the afternoon).
Tuesday went in for blood draw. Paige (my guardian angel), took me in and waited then returned me safely home. About 12 minutes later got a call from the oncology nurse that my red blood count was very low and they were worried about me waiting until the next day to get a unit (2 were scheduled if needed). I would have blown it off until the next day but she really seemed worried. The HGB was 7.7 (should be 11.6) and RGB 21.7 (should be 35). So since it seemed so important and I hated to ask Paige to jump back in her car and take me back, I called Jim and he came and got me at home then down to the treatment center. It made them very happy that I came back. Even though my count was so low, the 'little guys' circulating in my blood were carrying 98-100 per cent oxygen (working really hard). Guess that's why I wasn't pale or looked/felt too bad. They transfused me at a lower rate (the one they normally use) and it seemed to have less reaction later in the evening. Got out of the treatment center around 5:45 (they close at 6).
Wednesday Paige once again took me down to the treatment center. This time she didn't have to wait since we had it planned Jim would take me home. Got the 2nd unit of blood (again at the lower rate), everyone happy now, and headed home. I was napping during the transfusion, so I missed lunch. Jim was sweet enough to stop at Burger King and after a double whopper, fries and shake I was happy as a clam (very full clam). I was fine until around midnight when I started getting very warm (101.8) so took a pain pill (the one with Tylenol 500) and toughed it out. Finally around 2am it seemed to have broken (think it's a reaction to transfusion .. 2 units in 2 days, but I'm not a doctor). Slept pretty well for the rest of the night.
Thursday woke up feeling pretty darn good. Haven't felt this well in a couple of weeks. Hopefully it will last at least until after Mark & Ava's visit. I have to remember not to overdue it and pay the price later.
Oh, yeah, .... hair really falling out fast. Won't be long (I'm hoping it will hold out until next week), before you can call me 'cue ball'. Gotta get Jim to take a picture of what's left.
Well that's it for now. Don't know if I'll get around to updating until after the visit, but will try.
Oh yeah, found out 'anyone' can donate 'any type' blood in my name to help defray blood costs. Pretty cool huh? All they have to do is ask how to do it at their blood bank. Mark was talking about donating some blood so I asked about it.
Love to all
Monday was okay, just a tired achey day. Nice not having to go in for medical stuff. Back ache, trying to drink more fluids (yes Dianne I've been a ''naughty" girl, but I'm getting better). Tylenol got me through the day (only needed to take it in the afternoon).
Tuesday went in for blood draw. Paige (my guardian angel), took me in and waited then returned me safely home. About 12 minutes later got a call from the oncology nurse that my red blood count was very low and they were worried about me waiting until the next day to get a unit (2 were scheduled if needed). I would have blown it off until the next day but she really seemed worried. The HGB was 7.7 (should be 11.6) and RGB 21.7 (should be 35). So since it seemed so important and I hated to ask Paige to jump back in her car and take me back, I called Jim and he came and got me at home then down to the treatment center. It made them very happy that I came back. Even though my count was so low, the 'little guys' circulating in my blood were carrying 98-100 per cent oxygen (working really hard). Guess that's why I wasn't pale or looked/felt too bad. They transfused me at a lower rate (the one they normally use) and it seemed to have less reaction later in the evening. Got out of the treatment center around 5:45 (they close at 6).
Wednesday Paige once again took me down to the treatment center. This time she didn't have to wait since we had it planned Jim would take me home. Got the 2nd unit of blood (again at the lower rate), everyone happy now, and headed home. I was napping during the transfusion, so I missed lunch. Jim was sweet enough to stop at Burger King and after a double whopper, fries and shake I was happy as a clam (very full clam). I was fine until around midnight when I started getting very warm (101.8) so took a pain pill (the one with Tylenol 500) and toughed it out. Finally around 2am it seemed to have broken (think it's a reaction to transfusion .. 2 units in 2 days, but I'm not a doctor). Slept pretty well for the rest of the night.
Thursday woke up feeling pretty darn good. Haven't felt this well in a couple of weeks. Hopefully it will last at least until after Mark & Ava's visit. I have to remember not to overdue it and pay the price later.
Oh, yeah, .... hair really falling out fast. Won't be long (I'm hoping it will hold out until next week), before you can call me 'cue ball'. Gotta get Jim to take a picture of what's left.
Well that's it for now. Don't know if I'll get around to updating until after the visit, but will try.
Oh yeah, found out 'anyone' can donate 'any type' blood in my name to help defray blood costs. Pretty cool huh? All they have to do is ask how to do it at their blood bank. Mark was talking about donating some blood so I asked about it.
Love to all
Sunday, January 11, 2009
Bad weekend
Those Neumega shots really hit me hard. Thursday was pretty bad, Friday was bad until I took pain pill (from surgery) before going to bed (finally had a decent 4 hours of sleep). Saturday took another pain pill before going to bed (Dr. G's prescription). Was very hot most of the night then around 5am suddenly felt much better. Think the fever broke. Didn't feel too bad (bit tired of course) so did some library stuff and started load of laundry (have to put it in dryer now).
Don't know if I'll go in for couple of hours work tomorrow or wait for Tuesday when I go in for blood draw. I'll see how I feel.
Tuesday keep your fingers crossed. It would be SOOOOOOO nice to hear my lab work was within his parameters so I wouldn't need any blood, platelets or shots!
Oh yeah, as if things aren't bad enough ... now that my hair is growing guess what ... yep, it's coming out. Shedding worse than cats. Better have Jim take my picture before I look like a old patchy rug. Hopefully there will be enough left so Ava can see me with hair before it's gone again.
That's about it for now.
Love to all
Don't know if I'll go in for couple of hours work tomorrow or wait for Tuesday when I go in for blood draw. I'll see how I feel.
Tuesday keep your fingers crossed. It would be SOOOOOOO nice to hear my lab work was within his parameters so I wouldn't need any blood, platelets or shots!
Oh yeah, as if things aren't bad enough ... now that my hair is growing guess what ... yep, it's coming out. Shedding worse than cats. Better have Jim take my picture before I look like a old patchy rug. Hopefully there will be enough left so Ava can see me with hair before it's gone again.
That's about it for now.
Love to all
Thursday, January 8, 2009
Good news and bad news
Got in at 11am to get blood draw, make a long story short, poor Paige's back was getting to her by 3PM. By the time I got the shot it was 3:15, got schedule straightened and Jim picked me up at 4pm. Long day ...
Anyway here's what happened. Red blood went down a bit, white count shows in normal range, platelets went from yesterday's 26 to 36 (long way to go to 150). Got a shot of Neumega (5000), tomorrow and Saturday another shot (smaller dose). Then back again on Tuesday for blood draw, then home, then wait and they'll let me know if I need to come in for 2 units of blood, a shot, or it's okay (let's hope for that one). Repeat next Tuesday Jan 20/21. Then Jan 27 go in for blood work, doc visit & bone marrow biopsy (ouch), will have to wait couple of days for results. Hopefully it hasn't gone into marrow (or within limits for Zevalin ... next step). I told doc that it would be nice if it was a low number or not at all. He seems to think there is a good chance it hasn't spread there (coin toss).
Then next day Jan 28, I go back in to hospital for another round of eshap (just like before 4 days of 24 hour chemo drip). Fun fun fun. Sure miss going in to work. This has really burned up my time. Figure this last round has eaten pretty much all. Will have to ask how to draw on sick bank.
Anyway, kind of bitter sweet ... good news but another hard round to go. Let's hope for good news.
Love to all
Anyway here's what happened. Red blood went down a bit, white count shows in normal range, platelets went from yesterday's 26 to 36 (long way to go to 150). Got a shot of Neumega (5000), tomorrow and Saturday another shot (smaller dose). Then back again on Tuesday for blood draw, then home, then wait and they'll let me know if I need to come in for 2 units of blood, a shot, or it's okay (let's hope for that one). Repeat next Tuesday Jan 20/21. Then Jan 27 go in for blood work, doc visit & bone marrow biopsy (ouch), will have to wait couple of days for results. Hopefully it hasn't gone into marrow (or within limits for Zevalin ... next step). I told doc that it would be nice if it was a low number or not at all. He seems to think there is a good chance it hasn't spread there (coin toss).
Then next day Jan 28, I go back in to hospital for another round of eshap (just like before 4 days of 24 hour chemo drip). Fun fun fun. Sure miss going in to work. This has really burned up my time. Figure this last round has eaten pretty much all. Will have to ask how to draw on sick bank.
Anyway, kind of bitter sweet ... good news but another hard round to go. Let's hope for good news.
Love to all
Wednesday, January 7, 2009
Free Day
Yippee ... because of lab results got Weds off. Got a shot of NEUPOGEN to stimulate the cells and went home. Would have liked to have had a nap, but phone kept ringing, temp was going up for afternoon so took 2 reg. Tylenol, then the guy to do shoveling came by and we yakked until 4:15 when he started. When Jim got home I crashed and didn't wake until 7:30. By that time my back was killing me (figuratively), but I couldn't take any more Tylenol until 1AM. It was from the shot, but if I had realized it was going to be so bad, I would have taken the extra strength version. Anyway, I went to bed and tried to find a position where it wouldn't hurt so much (yeah right), and woke up on my own around 1AM (how did I do that????). Took 2 extra strength , my antibiotics (wasn't able to take morning dose until 1pm because I forgot to bring with me to dr.). After a bit, the pain lightened up so was able to sleep until Jim's alarm went off. Felt much better when I got up for thyroid meds (6:45), went back to sleep and haven't taken another Tylenol since. I'm sure around 7:30 the temp will go up again, but if my back doesn't hurt will only take regular.
Doc will be on vacation for 2 weeks so don't know what his replacement will do. Hoping he'll just be keeping an eye on my labs.
Here's where I stand (or sit I guess) as of Tuesday:
Red Blood count (RBC) 3.69 (low normal 3.80) but I got 2 units of blood on Monday
Platelets (PLT) 21 (low normal 150) long way to go but up from Monday
White cells (WBC) 2.4 (low normal 4.0)
All were going up, slightly, but at least going up.
Keep those prayers coming that the cancer got a "severe" beating after that 4 day chemo. Still figure I've got better odds of beating this than winning the lottery.
Love to all
Doc will be on vacation for 2 weeks so don't know what his replacement will do. Hoping he'll just be keeping an eye on my labs.
Here's where I stand (or sit I guess) as of Tuesday:
Red Blood count (RBC) 3.69 (low normal 3.80) but I got 2 units of blood on Monday
Platelets (PLT) 21 (low normal 150) long way to go but up from Monday
White cells (WBC) 2.4 (low normal 4.0)
All were going up, slightly, but at least going up.
Keep those prayers coming that the cancer got a "severe" beating after that 4 day chemo. Still figure I've got better odds of beating this than winning the lottery.
Love to all
Monday, January 5, 2009
A tiny bit of positive news
Went in to get blood draw and see doc today. My labs showed that the red blood cells were only 9.1 (should be 'at least' 10) so got 2 units of blood. BUT my platlets were UP from 10,000 on Friday to 16,000 today, also my white cells while still in the toilet went up too! Hopefully this shows a good trend!
Go in again tomorrow morning for another blood workup and doc visit. I'm figuring that I may just have to get the white cell stimulation shot and go home. Keep your fingers crossed that the results keep going up.
Love to all
Go in again tomorrow morning for another blood workup and doc visit. I'm figuring that I may just have to get the white cell stimulation shot and go home. Keep your fingers crossed that the results keep going up.
Love to all
Sunday, January 4, 2009
Saturday night fever (not the movie)
Friday evening started getting fever (higher than when I should call but of course I didn't), took Tylenol and it went down. Went back up at next dose time so took more and by 6:45 am Saturday it was 97.3(my normal is around 97.6-97.9). So after getting lectures from friends and family about my not calling 24 hour cancer center line, I decided to take my temp more often and when it should signs of going up (98.5 or higher) I'd take Tylenol and keep it down.
All was going well until afternoon, when temp went up to 99.7 so just took 1 extra strength Tylenol and it went down and stayed down until 7:30 went it started going up again (99.7) took 2 regular Tylenol and hour later temp was 100.7 (went up instead of down). Of course I got freaked out, never gone up always gone down, so I called the number and was transferred to on call doc (happened to be my doc). My ears were muffled, and he was speaking so softly that it was hard to communicate. Anyway he asked if I had the antibiotics (didn't realize he had written prescription Friday so never got it called in and filled). I said no, and he said I didn't sound like I was communicating in my usual manner (disoriented ... but gosh I was freaked out and was trying to update him, but I realize now I was jumping around with times and forgetting to tell him days). Anyway he said I should go to the emergency room for evaluation and possible treatments.
By now it was almost 9pm, but was able to get in touch with Deb, and she took me in. Was being examined by 11pm. Heart rate was up to 154 (went down to 134 in couple minutes). My normal rate is in 90s, and since the last round of chemo it's been around 112-114. Blood pressure was okay and really felt okay except for fever. When they took my temp, it was 98.8 (thank goodness). ER doc came and talked while examining, and thought maybe an EKG would be in order to make sure that even though my heart was fast it had the "right waves". Then he called Dr. G and they decided I should stay and get saline fluids and IV antibiotic. Dr. G wants to see me Monday (not his normal clinic day) for a white cell stimulation shot, but have no idea of what time. Would be nice to know since I have to arrange for transport. I was to get a prescription for Ciprofloxacin and thank goodness CDA has Walgreen with 24 hour pharmacy so we could pick it up on way home (didn't even have to go out of the way since we were going right past it).
They weren't sure 'why' I was getting the fevers, could be reaction due to the blood products, or maybe an infection (since my counts were so low), but that the 10 days of antibiotics were a good addition to my meds, just in case it is an infection.
Deb, bless her heart, trouped right along with me, even though she was exhausted. We finally got out of the hospital by 1:30 am (temp was 98.8), stopped and filled prescription, and made it home by 3am! Sneezed a couple of times on way home, and could 'taste' the saline (or maybe the IV antibiotics). Of course it had to make me nauseated so threw up (nothing in my stomach anyway). Once I was sure my tummy settled down I could hear Mark in the back of my head saying 'take the anti-naseau pill', so I did then went to sleep until 6:45 when I had to take my thyroid pill. Temp was 97.7 so went back to sleep and woke up around 11am. Temp was 98.3 so will keep an eye on it. If it follows what is becoming a pattern it will go up around mid afternoon, then again early evening. I'm to keep taking my temps and take Tylenol if it starts climbing again.
Then I've still got the Tuesday appointment for labs, doc visit and who knows what else.
I'm very susceptible to infection so need to keep away from public until the count goes up (so much for doing a couple of hours at work this week). Anyway, Jim will be back Monday (snow storm day) and hopefully all will settle down and my labs will start coming back good.
Love to all
All was going well until afternoon, when temp went up to 99.7 so just took 1 extra strength Tylenol and it went down and stayed down until 7:30 went it started going up again (99.7) took 2 regular Tylenol and hour later temp was 100.7 (went up instead of down). Of course I got freaked out, never gone up always gone down, so I called the number and was transferred to on call doc (happened to be my doc). My ears were muffled, and he was speaking so softly that it was hard to communicate. Anyway he asked if I had the antibiotics (didn't realize he had written prescription Friday so never got it called in and filled). I said no, and he said I didn't sound like I was communicating in my usual manner (disoriented ... but gosh I was freaked out and was trying to update him, but I realize now I was jumping around with times and forgetting to tell him days). Anyway he said I should go to the emergency room for evaluation and possible treatments.
By now it was almost 9pm, but was able to get in touch with Deb, and she took me in. Was being examined by 11pm. Heart rate was up to 154 (went down to 134 in couple minutes). My normal rate is in 90s, and since the last round of chemo it's been around 112-114. Blood pressure was okay and really felt okay except for fever. When they took my temp, it was 98.8 (thank goodness). ER doc came and talked while examining, and thought maybe an EKG would be in order to make sure that even though my heart was fast it had the "right waves". Then he called Dr. G and they decided I should stay and get saline fluids and IV antibiotic. Dr. G wants to see me Monday (not his normal clinic day) for a white cell stimulation shot, but have no idea of what time. Would be nice to know since I have to arrange for transport. I was to get a prescription for Ciprofloxacin and thank goodness CDA has Walgreen with 24 hour pharmacy so we could pick it up on way home (didn't even have to go out of the way since we were going right past it).
They weren't sure 'why' I was getting the fevers, could be reaction due to the blood products, or maybe an infection (since my counts were so low), but that the 10 days of antibiotics were a good addition to my meds, just in case it is an infection.
Deb, bless her heart, trouped right along with me, even though she was exhausted. We finally got out of the hospital by 1:30 am (temp was 98.8), stopped and filled prescription, and made it home by 3am! Sneezed a couple of times on way home, and could 'taste' the saline (or maybe the IV antibiotics). Of course it had to make me nauseated so threw up (nothing in my stomach anyway). Once I was sure my tummy settled down I could hear Mark in the back of my head saying 'take the anti-naseau pill', so I did then went to sleep until 6:45 when I had to take my thyroid pill. Temp was 97.7 so went back to sleep and woke up around 11am. Temp was 98.3 so will keep an eye on it. If it follows what is becoming a pattern it will go up around mid afternoon, then again early evening. I'm to keep taking my temps and take Tylenol if it starts climbing again.
Then I've still got the Tuesday appointment for labs, doc visit and who knows what else.
I'm very susceptible to infection so need to keep away from public until the count goes up (so much for doing a couple of hours at work this week). Anyway, Jim will be back Monday (snow storm day) and hopefully all will settle down and my labs will start coming back good.
Love to all
Friday, January 2, 2009
In the 'tank'
Tuesday went in had had bloodwork done, there are 3 parts to the blood, white blood cells, red blood cells, and platelets. Normal platelet count is usually 15,000 - 40, 000, mine was 3,000 with red cells being low but not too bad. CDA to Spokane had NO platelets available, but when nurses were talking going through the underground tunnel, a surgeon said his surgery was cancelled and I could have his unit. So I got a transfusion of platelets and blood.
Wednesday went in again and this time there were 4 units of platelets available, but only for 'bleeders'. My count was up to 13000, but my reds were critical. While I was waiting in exam room my nose started seeping blood so guess what ... yep ... I got one of the 4 plus more blood.
Thursday (New Years day), no appointment, but tummy was screwy from having too sweet a breakfast, and later in the evening my temp went up to 100.3 (supposed to call if 100.5), took some Tylenol and it went down, but came back up when next dose due, so took 2 reg Tylenol. At 2am (Friday) I woke up suddenly feeling very good and my temp went down to 98.6 (my normal is around 97.9). When I told nurse she wasn't happy. Since my platelets were so low, I should have called when I was showing the fever. Anyway, today's labs showed my platelets dropped to 10,000, but my reds came up to low (9.something out of 10), so I got more platelets (they got a shipment in and I was able to get my blood type A+ for platelets this time (got O+) lst couple of times. However found out that my white blood cells (fight infection) were almost zip (.02 or something like that. So I'm very susceptible for infection.
When I got the Weds transfusion the blood products weren't "irritated" and doc said okay this time. The irradiation kills the antigens in the blood products to try to illuminate any reaction from the donor. Nurse (upstairs), said that could be a possible reason for the fever. Anyway felt pretty good today, tired right now, but I'm sure a nap won't hurt.
Jim made it to Boise okay, and will be home Monday, so I'll be home alone. I'll miss him, but he really needed to get away from all this medical, snow and get some face time with the granddaughter.
Love to all
Wednesday went in again and this time there were 4 units of platelets available, but only for 'bleeders'. My count was up to 13000, but my reds were critical. While I was waiting in exam room my nose started seeping blood so guess what ... yep ... I got one of the 4 plus more blood.
Thursday (New Years day), no appointment, but tummy was screwy from having too sweet a breakfast, and later in the evening my temp went up to 100.3 (supposed to call if 100.5), took some Tylenol and it went down, but came back up when next dose due, so took 2 reg Tylenol. At 2am (Friday) I woke up suddenly feeling very good and my temp went down to 98.6 (my normal is around 97.9). When I told nurse she wasn't happy. Since my platelets were so low, I should have called when I was showing the fever. Anyway, today's labs showed my platelets dropped to 10,000, but my reds came up to low (9.something out of 10), so I got more platelets (they got a shipment in and I was able to get my blood type A+ for platelets this time (got O+) lst couple of times. However found out that my white blood cells (fight infection) were almost zip (.02 or something like that. So I'm very susceptible for infection.
When I got the Weds transfusion the blood products weren't "irritated" and doc said okay this time. The irradiation kills the antigens in the blood products to try to illuminate any reaction from the donor. Nurse (upstairs), said that could be a possible reason for the fever. Anyway felt pretty good today, tired right now, but I'm sure a nap won't hurt.
Jim made it to Boise okay, and will be home Monday, so I'll be home alone. I'll miss him, but he really needed to get away from all this medical, snow and get some face time with the granddaughter.
Love to all
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