The big day is over! Hurray!!
Got to the cancer center and checked in okay. They weighed me and I lost another 10 pounds (from dr. office scale). I now weigh what I weighed over 20 years ago. Still can lose more weight before I get to where I really should be.
Went to my little cubicle with the reclining chair where the nurse (Linda) did the access to my port for the IV's. She gave me 2 Tylenol and 1 Benedryl. After around 30 minutes or so she started the Ritux at the lowest of 5 settings. All was going okay until the time came to bump it up to the next level (faster rate). After around 5 minutes my forehead started feeling warm, then my eyes and finally my cheeks turned red. She turned off the drip until I returned to a 'cooler' state, then started it up at the lower level. When it came time to bump it up again, she put it at a lower number than the usual rate to stretch it out a little more.
Someone comes and takes blood pressure, temperature and oxygen level every 30 minutes. After Linda bumped me up to the next level (after about 5 minutes) I was checked again and my blood pressure started to go down. It eventually went down to the 80's over 60's (don't know exact but it was in that range). She stopped the drip and they checked me again after a few minutes, but my pressure was still very low. I was also a little dizzy when I tried to sit up (sore tail bone). After calling the dr. she gave me a liter of saline to bring up my volume. That took an hour. Finally my pressure went up into the 90's and the dr.'s nurse said to start it up again (regen me). Linda kept the drip at the level that no reaction occurred. She said she could bump it up again, but even though it will take longer it might be better to keep it at that rate and get the entire thing in.
Finally after 7 hours I was finished (in more ways than one!). They did give me a nice roast beef sandwich for lunch (11:30). Was able to get up and not be dizzy and we were outta there.
Poor Jim ... just sitting there all day long. At least he had his laptop, movies, and was able to use the center's wi-fi. He also got a break when he went out to lunch (they don't feed guests).
Quick stop at Super 1 where Jim bought me a bottle of water (33 oz) and homeward bound. Was too late to call library to let you all know.
I have to drink 3 quarts of water for at least 48 hours after infusion. I managed to get it in me before I went to bed. Of course what goes in must come out so every couple of hours thoughout the wee (hee hee) hours meant a visit to the bathroom.
Today (Sat) I at least have all day to drink it. Almost have the last quart finished.
Sorry it took so long to post this, but Friday I was wiped out.
Love to all
Saturday, May 31, 2008
Thursday, May 29, 2008
Busy day
Felt pretty good today so went out and visited the folks Hayden library and Athol library. It was great seeing everyone and updating in person. Was able to put on a 'sea green' pair of pants & cotton sweater (given to me a couple of years ago) that had been in my "someday it may fit" bag. Looked pretty good I think.
Tomorrow's the big day ... I don't know if I'll post anything, but if I'm feeling half way okay, I'll let everyone know how it went. If not ... well, tomorrow's another day (to quote Scarlet).
Of course, by afternoon it hit me, but a short nap gave me a little boost for the rest of the evening.
Not looking forward to drinking the gallon of water a day, but glub, glub, glub ... gotta do what ya gotta do right?
Love to all
Tomorrow's the big day ... I don't know if I'll post anything, but if I'm feeling half way okay, I'll let everyone know how it went. If not ... well, tomorrow's another day (to quote Scarlet).
Of course, by afternoon it hit me, but a short nap gave me a little boost for the rest of the evening.
Not looking forward to drinking the gallon of water a day, but glub, glub, glub ... gotta do what ya gotta do right?
Love to all
Wednesday, May 28, 2008
Schedule closer
Getting ready for the big day (Friday). Found out they couldn't schedule cardiagram for Friday, but can have the Ritux anyway. Probably early next week for the cardiagram (takes around an hour or so). Then following Friday "CHOP" plus another "R" session. An all day session at the cancer center. Should be closer to setting chemo schedule by then.
Not much else going on. Miss everyone terribly ... hopefully I'll be able to come back to work (maybe not full schedule) pretty soon.
Think I lost a couple more pounds (will find out on dr.'s scale next week). I don't think I've weighed this amount for 20 years! Will have to dig out all my 'skinny' clothes (if I can find them). Of course they probably are all out of date but ... hey who cares I'm an old lady and can do what I want right?
Love you all
Not much else going on. Miss everyone terribly ... hopefully I'll be able to come back to work (maybe not full schedule) pretty soon.
Think I lost a couple more pounds (will find out on dr.'s scale next week). I don't think I've weighed this amount for 20 years! Will have to dig out all my 'skinny' clothes (if I can find them). Of course they probably are all out of date but ... hey who cares I'm an old lady and can do what I want right?
Love you all
Tuesday, May 27, 2008
Lotsa stuff
Thought I'd take a day off from writing this (Memorial Day). Had such a great day Sunday, that, yep, you got it, I over did it. Made up for it Monday by napping. The visiting nurse that came to do my dressing change came at 8AM!!! A little toooooo early for my liking, but you gotta take what you can. Both Jim and I took a nap after she left.
All in all Monday wasn't too bad except for the payback for Sunday.
Since the first round of "CHOP", I've been able to eat. Boy, is that a wonderful thing. Still have to learn my eyes and brain think my stomach can hold more than it can, but I am really enjoying eating again.
Another big milestone will be Friday. They were going to have me start the "R" Rituximab today (Tues), but I needed the ecg(?) done first so it's been all scheduled for Friday. Test at 9:45, then over to the cancer treatment center for the "R" infusion. Keep your fingers, toes, eyes, ears, all body parts crossed and prayers/good thoughts coming my way for that. Let's hope I'm in the batch of people that can tolerate it well. Don't need any more problems other than what I have going now.
Go to see Dr. Grosset on Friday June 6, then cycle 2 of "CHOP". Guess I'll be alternating between "CHOP" and "R". Early appointment (9:30 for labs, see dr at 10, then upstairs to chemo infusion). Hopefully it will go as well for second cycle as the first went.
My biopsy wound is healing nicely and hopefully will be all better soon. You know how those things go.
Love to all
All in all Monday wasn't too bad except for the payback for Sunday.
Since the first round of "CHOP", I've been able to eat. Boy, is that a wonderful thing. Still have to learn my eyes and brain think my stomach can hold more than it can, but I am really enjoying eating again.
Another big milestone will be Friday. They were going to have me start the "R" Rituximab today (Tues), but I needed the ecg(?) done first so it's been all scheduled for Friday. Test at 9:45, then over to the cancer treatment center for the "R" infusion. Keep your fingers, toes, eyes, ears, all body parts crossed and prayers/good thoughts coming my way for that. Let's hope I'm in the batch of people that can tolerate it well. Don't need any more problems other than what I have going now.
Go to see Dr. Grosset on Friday June 6, then cycle 2 of "CHOP". Guess I'll be alternating between "CHOP" and "R". Early appointment (9:30 for labs, see dr at 10, then upstairs to chemo infusion). Hopefully it will go as well for second cycle as the first went.
My biopsy wound is healing nicely and hopefully will be all better soon. You know how those things go.
Love to all
Sunday, May 25, 2008
Pretty good day
Well, today has been a pretty good day. Managed to do a little around the house and not fizzle out. Hopefully tomorrow will be as good. The compression stockings aren't really too bad. They are really quite comfortable and seemed to have reduced the swelling in my feet and ankles.
Will be glad when this next week is over. Anxious about the upcoming treatment (whenever it is). Half of me wants it over with and the other half doesn't want the day to come. Oh well, I guess I'll just have to suck it up and step up to the plate. Take the days as they come. Not much else I can do is there?
I've had some concerns as to how to get to treatments (Jim can pick me up and take me home) once a schedule is set up, but I've been assured not to worry .... Thank you!
Except for having to drink all this water and waking up to go at 2 am, 4 am and 6am, it's been a pretty good couple of days.
Oh, by the way ... found out the birds wake up and start singing at 4am each day! Nice, but not if you're trying to fall back to sleep. Guess I'll learn to ignore or enjoy.
Love you all .... thank you for being here for me.
Will be glad when this next week is over. Anxious about the upcoming treatment (whenever it is). Half of me wants it over with and the other half doesn't want the day to come. Oh well, I guess I'll just have to suck it up and step up to the plate. Take the days as they come. Not much else I can do is there?
I've had some concerns as to how to get to treatments (Jim can pick me up and take me home) once a schedule is set up, but I've been assured not to worry .... Thank you!
Except for having to drink all this water and waking up to go at 2 am, 4 am and 6am, it's been a pretty good couple of days.
Oh, by the way ... found out the birds wake up and start singing at 4am each day! Nice, but not if you're trying to fall back to sleep. Guess I'll learn to ignore or enjoy.
Love you all .... thank you for being here for me.
Saturday, May 24, 2008
BIts and pieces
Well, I guess I'm going through another stage ... the "is it really happening to me" stage ... It seems like I'm sitting back watching this happen to someone else, then wham ... it isn't someone else it's me! Of course that brought on the weepy again, but it was just a short one. Jim is so good at comforting me at those times. We'll just have to take it day by day. Knowing that this is 'normal' really helps, but it still seems unreal.
Today my blood pressure was the lowest it's been in a while (very good), and pulse was lower as well. Actually didn't feel too bad, but still felt crappy. Can't quite figure that one out. Couldn't fall asleep last night until the "wee" hours (literally) of the morning. Fell asleep listening to my ocean waves (gosh ... more water!!) no wonder I had to get up and pee (LOL)
Got my 'compression stockings' yesterday (feet swelling) and the visiting nurse (she changes my wound bandaging) helped me put them on. I thought I'd hate them, but they really don't feel bad. Will take them off tonight and put on again in morning.
Still apprehensive about the "R" next week, but guess I'll just have to muddle on. They say the first dose is the most dangerous.
Keep me in your thoughts and prayers
Love you all
Today my blood pressure was the lowest it's been in a while (very good), and pulse was lower as well. Actually didn't feel too bad, but still felt crappy. Can't quite figure that one out. Couldn't fall asleep last night until the "wee" hours (literally) of the morning. Fell asleep listening to my ocean waves (gosh ... more water!!) no wonder I had to get up and pee (LOL)
Got my 'compression stockings' yesterday (feet swelling) and the visiting nurse (she changes my wound bandaging) helped me put them on. I thought I'd hate them, but they really don't feel bad. Will take them off tonight and put on again in morning.
Still apprehensive about the "R" next week, but guess I'll just have to muddle on. They say the first dose is the most dangerous.
Keep me in your thoughts and prayers
Love you all
Friday, May 23, 2008
Feaked out but holding
Hi all,
Today I spent most of the afternoon at the surgeon's office. My port looks fine and my biopsy wound is looking much better. Tired, but okay. Looking forward to the weekend and napping (dr. appointments kinda spoiled my afternoon naptime).
Apprehensive about next week and the Rituxan. Did some surfing and it scared the heck out of me with the side effects at time of IV. After freaking out for a while, Jim took a look at the literature that was given at the time of our Chemo Training, and it calmed me down a bit. Still, will be a scary time. Fever, chills are mostly expected, but there are a whole bunch of others that may occur in 10-29 percent. Then there is all the water you have to drink because of possible damage to kidneys due to the dead cancer cells. Heart problems a possiblility a couple of days later. Think this scares me more than the CHOP cycle.
Haven't been given the treatment date yet. Since Monday is a holiday I know I won't hear anything until Tuesday.
Love to all
Today I spent most of the afternoon at the surgeon's office. My port looks fine and my biopsy wound is looking much better. Tired, but okay. Looking forward to the weekend and napping (dr. appointments kinda spoiled my afternoon naptime).
Apprehensive about next week and the Rituxan. Did some surfing and it scared the heck out of me with the side effects at time of IV. After freaking out for a while, Jim took a look at the literature that was given at the time of our Chemo Training, and it calmed me down a bit. Still, will be a scary time. Fever, chills are mostly expected, but there are a whole bunch of others that may occur in 10-29 percent. Then there is all the water you have to drink because of possible damage to kidneys due to the dead cancer cells. Heart problems a possiblility a couple of days later. Think this scares me more than the CHOP cycle.
Haven't been given the treatment date yet. Since Monday is a holiday I know I won't hear anything until Tuesday.
Love to all
Thursday, May 22, 2008
Exhausting day
Totally exhausting day. Felt better than in days, but that was before Dr. appointment. Waited for blood to be drawn, then for dr. to see me. He checked my neck lymph node and smiled. Said it was reduced. Which means it looks like the lymphoma is repsonding to the chemo. Still lumpy under arm pits, but it's only been one round. Keep your fingers crossed, looks like I may be in the 80 percent (so far).
He wants to start me on Rituxan (part of CHOP-R) next week. It can have nasty side effects. Also wants me to get an ultrasound of my heart (forgot the name). So more tests in the works.
Good note ... he left smiling.
Will post more tomorrow, I'm really wiped out. Been a very busy day.
Love you all
He wants to start me on Rituxan (part of CHOP-R) next week. It can have nasty side effects. Also wants me to get an ultrasound of my heart (forgot the name). So more tests in the works.
Good note ... he left smiling.
Will post more tomorrow, I'm really wiped out. Been a very busy day.
Love you all
Wednesday, May 21, 2008
Deep Thoughts
Well, another day so-so day is coming to an end. Energy, stamina on a see-saw again. Tomorrow is blood tests and oncologist to find out what cycle to do (1 on 2 off / 1 on 3 off). Still tired, seem to have energy at first and then like a leak in a balloon, whoosh, it all disappears. I’m hoping to have enough gathered together to drive in, wait, meet, and then drive home. I think I worry more about the drive in than the actual appointment. Just don’t want to run out of umph before I get home. Afternoons seem to be when I started the downward wave and the appointment is set for the afternoon. I’ll absorb what the doctor says and then let you all know what’s going on next.
Then I go in again on Friday to the surgeon to look at my port surgery. Will see if he can give me more information about my biopsy wound.
Strange places the mind goes while undergoing the ‘great adventure’. Even though you talk about it, it still doesn’t seem to be really happening to you. All my wonderful friends mean more to me than I ever realized. One is so overwhelmed with information (still haven’t read all of it) of what to expect, how to deal, but it really doesn’t sink in until the quiet times. Everyone says to stay positive, which, obviously is what to do, but deep down you still have that question haunting you. Enough!!!! Go away morbid thoughts! Time to think positive again! Darn downward wave!
Looking forward to the evening upswing.
Love you all
Then I go in again on Friday to the surgeon to look at my port surgery. Will see if he can give me more information about my biopsy wound.
Strange places the mind goes while undergoing the ‘great adventure’. Even though you talk about it, it still doesn’t seem to be really happening to you. All my wonderful friends mean more to me than I ever realized. One is so overwhelmed with information (still haven’t read all of it) of what to expect, how to deal, but it really doesn’t sink in until the quiet times. Everyone says to stay positive, which, obviously is what to do, but deep down you still have that question haunting you. Enough!!!! Go away morbid thoughts! Time to think positive again! Darn downward wave!
Looking forward to the evening upswing.
Love you all
Tuesday, May 20, 2008
So far so good
Boy can you tell I’m a rookie at this blog thing? I’m putting the date on each posting and finally notice it does it automatically…. Duh … Maybe I can come up with some better ‘titles’ …. But don’t count on it.
Not too bad of a day so far. Finished with the prednisone yesterday and only a few more pills of others before I’m down to just antibiotics & nighttime pain pill. Trying to get up and move around more. Been able to work on web stuff on computer, so at least I know my brain isn’t going to mush quite yet. Good to get into that mode again.
One nice thing is that I don’t have the “wet head” sweats anymore. My head got so wet at times I thought I’d have to carry a towel with me.
Evening time is here and I’m starting to crash fast. Afternoon naps help, but then takes me a while to get going again and stamina not that long lasting. Back bothering me again, but heating pad seems to help until pill time.
Maybe one of these days I’ll figure out my ‘best time of day’ to do things.
Love you all
Not too bad of a day so far. Finished with the prednisone yesterday and only a few more pills of others before I’m down to just antibiotics & nighttime pain pill. Trying to get up and move around more. Been able to work on web stuff on computer, so at least I know my brain isn’t going to mush quite yet. Good to get into that mode again.
One nice thing is that I don’t have the “wet head” sweats anymore. My head got so wet at times I thought I’d have to carry a towel with me.
Evening time is here and I’m starting to crash fast. Afternoon naps help, but then takes me a while to get going again and stamina not that long lasting. Back bothering me again, but heating pad seems to help until pill time.
Maybe one of these days I’ll figure out my ‘best time of day’ to do things.
Love you all
Monday, May 19, 2008
See-Saw (May 19)
Well, this morning started out okay .... was feeling good and making plans for rest of the day ... maybe a little computer work, couple of things for laundry ... well that got shot down fast. Took my chemo pills, tried to nap, and just felt wiped out for rest of day. Today is last day of first round of Prednisone (supposed to make you feel wired, but makes me want to nap).
I have to drink a GALLON of water a day! I have enough problems trying to drink a quart, let alone a gallon, but I'm doing the best I can ... gotta protect those kidneys & bladder.
One thing that is a pleasant change is that I can eat again (not much, but something).
It's 11pm and I think I'm feeling the best I have since this morning. Of course, just in time to go to sleep.
Hope all is going well with all of you ... I'm always thinking of you.
I have to drink a GALLON of water a day! I have enough problems trying to drink a quart, let alone a gallon, but I'm doing the best I can ... gotta protect those kidneys & bladder.
One thing that is a pleasant change is that I can eat again (not much, but something).
It's 11pm and I think I'm feeling the best I have since this morning. Of course, just in time to go to sleep.
Hope all is going well with all of you ... I'm always thinking of you.
Sunday, May 18, 2008
Sunday May 18
Felt better this morning. Blood pressure and pulse down. Able to eat a little, and sleep. Took a nap this afternoon, but felt crummy this afternoon. Little better as the day goes by, but at least no aches.
Sweet Jim bought me a movable room airconditioner and installed it today. He's such a sweetie. He does my evening wound packing change with the visiting nurse doing the morning change. The biopsy wound doesn't help, but at least it's not infected, or painful. It's just something else to deal with.
Sorry I just kinda ramble on with a medical report rather than feelings, but maybe it will become more interesting later.
Poor kitties are confused "mommy" doesn't really want to cuddle with them anymore, but they are adjusting.
Interesting sidepoint from chemo training. Nurse said to be sure flush twice when using the toilet. Said one of her patients had said her dog was having sympathy hair loss. Turns out the dog was drinking from the toilet and getting some of the residue chemo drugs....
Love you all and miss you.
Sue
Sweet Jim bought me a movable room airconditioner and installed it today. He's such a sweetie. He does my evening wound packing change with the visiting nurse doing the morning change. The biopsy wound doesn't help, but at least it's not infected, or painful. It's just something else to deal with.
Sorry I just kinda ramble on with a medical report rather than feelings, but maybe it will become more interesting later.
Poor kitties are confused "mommy" doesn't really want to cuddle with them anymore, but they are adjusting.
Interesting sidepoint from chemo training. Nurse said to be sure flush twice when using the toilet. Said one of her patients had said her dog was having sympathy hair loss. Turns out the dog was drinking from the toilet and getting some of the residue chemo drugs....
Love you all and miss you.
Sue
Saturday May 17
Well, today didn't start out to well. Felt crummy all over. Figure from Friday's shot. Stumbled through the day. Hopefully will feel better tomorrow.
Friday, May 16, 2008
Oncologist visit
Finally the port placement. Had to show up at the Outpatient surgery at 6:15am, then the surgery at 8:15. All went well, except I through the surgeon for a minor loop. Seems my vein wasn't quite as far over as the normal one is (leave it to me). Anyway, got it all installed, went to recovery, and then downstairs for the xray to be sure it was set right.
Next the visit with the Oncologist. Felt the worst I have since this all began. Had confusion over schedule with chemo which through me in a real loop. Anyway, we got that straightend out, and up to chemo. Was out of there by 4:15. Felt really good (of course all those good surgery meds didn't hurt any). i've got some very heavy duty pills to take for a week (really heavy dose of prednisone). Prednisone is supposed to make you 'hyper' but so far the pills have made me sleepy.
Here it is 24 hours later and I'm still feeling pretty good. Went in today May 16 to have a shot of neulasta to boost my bone marrow to produce more white cells.
Have been able to eat a little. Codine blocks you up so got to keep those tracks clear. However gotta put stuff in one end to get it out the other .. LOL
Will try to post as often as I can.
Love you all ... keep those prayers, thoughts and wishes coming my way. They work! You all Rock!
Sue
Next the visit with the Oncologist. Felt the worst I have since this all began. Had confusion over schedule with chemo which through me in a real loop. Anyway, we got that straightend out, and up to chemo. Was out of there by 4:15. Felt really good (of course all those good surgery meds didn't hurt any). i've got some very heavy duty pills to take for a week (really heavy dose of prednisone). Prednisone is supposed to make you 'hyper' but so far the pills have made me sleepy.
Here it is 24 hours later and I'm still feeling pretty good. Went in today May 16 to have a shot of neulasta to boost my bone marrow to produce more white cells.
Have been able to eat a little. Codine blocks you up so got to keep those tracks clear. However gotta put stuff in one end to get it out the other .. LOL
Will try to post as often as I can.
Love you all ... keep those prayers, thoughts and wishes coming my way. They work! You all Rock!
Sue
May 11
Feeling really bad, new pains, new places. Pain pills not completely working. Next Thursday meet with oncologist for evaluation for port placement and chemo.
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