Believe me, I am not hung up on having a birthday and spending the day feeling awful, getting blood and IV antibiotics. Anytime I get to have a birthday, it is a good one.....just some are a bit more fun than others. They did not admit me so I got to go home late yesterday.
My temp is up and down today --as high as 104.1 and as low as 99.7. Last time I took it it was 103.2 and I left thr Doc a message. HAve not heard back. I just drank some water to I will check it again in a few minutes. This time I am hopeful if I can stay out of the hospital tonight I think I may be home free. Bob and I both have been pretty paranoid so anytime one of us wakes up in the night I take my temperature. At 4am when it was 104.1 there was no way I was going anywhere or calling anybody. At 730 it had come down in the 102 or so which is more reasonable. Just checked it again and now it 102.5 so hopefully the way it is moving around that will be enough to keep me home tonight and out of Crawford Long.
Each day will get better from here. I see the Doc on Wednesday, and assuming all goes well (no reason why it shouldn't based on history) I should get my PICC like out! Nurse Kathy says we will have to see how much drainage I am producing to see what to do about the wound vac. I am Vac-less again this weekend. She thinks I could need it again for a week but that may be it. I am going to quit trying to second guess and negotiate around this. It just does no good and is waste of time. If Bob reads this he will never believe it. Negotiation just does not work (well) in medicine -- no sales involved--so I need to learn, "It is what it is". We'll see if I can do it!
No weekend plans of course. Bob plays tennis Sat morning for a couple hours.
AL vs FSU comes on sometime and I want to rent a movie -- which I never do. Georgia Rule if we can get it. And that is about it. New temp 101.9 and I am sweating now especially my little bald head. That is good. Maybe fever is breaking. Doc has still not called back so maybe he is fine with the numbers.
Friday, September 28, 2007
Wednesday, September 26, 2007
Still on hold
While my fever was only 99.5 when I got to the Dr it was on the rise and up to about 100 now. If it goes to 100.5 and sustains and hour or goes to 101 then I go to the hospital. The doc is going to do everything he can to direct admit and not send me to ER but we will see. My white count was the lowest it has been at .4. I need blood and will get two units tomorrow so that will help. I have had a great week but I know the next few days are always my bad days. When I got out of the shower this morning I had absolutely no energy and had to lie down for about an hour before we left to go to the doc. On a good note, Nurse Kathy left the wound vac off again till at least Monday. She says if there is not alot of drainage she is going to recommend to Doc O that we leave it off altogether! Yea.
The dress ....it looked much better than it did 8+ years ago. However, it is not a "magic" dress and I think it looked a little dowdy -- probably did then too. So it goes in the give away stack (cocktail dress with sparkly things and jacket, lavendar, size 12 - any takers?) Time for me to get a new one if the occasion arises.
Really tired today so I will sign off now.
The dress ....it looked much better than it did 8+ years ago. However, it is not a "magic" dress and I think it looked a little dowdy -- probably did then too. So it goes in the give away stack (cocktail dress with sparkly things and jacket, lavendar, size 12 - any takers?) Time for me to get a new one if the occasion arises.
Really tired today so I will sign off now.
Tuesday, September 25, 2007
A human time bomb
A human time bomb is what I feel I am right now. However, I feel fine. Today is the day my fever usually goes up and if I can keep it under 100.5 and my white count is ok tomorrow I can stay out of the hospital. All day long my fever was way below normal in the 98.2 range. About 4pm it got to 98.6 (normal) and now at 5:18 it is 99.2 -- still nothing much but rising for no reason I can determine. I feel fine--been working most of the day. I had IV fluids for way too long this afternoon, but I know I still need to drink more. They really don't want you to use fever reducing products (much) because that becomes an artificial measurement and they can't tell if you are really sick. However, I did take one pill with some Tylenol in it (the fluids always give me a headache) so the 99.2 may be slightly low. I hate being this paranoind when I feel fine but this chemo does strange things to your body.
Just know this - when I ended up in the hospital last time for 5 days I told the internist that I had one chemo treatment left. I asked him if I should even consider not taking it knowing that again I could end up in the hospital and maybe it was just too much for my body. He rephrased my question and said "You are asking me what kind of hit did your body take as a result of your last chemo treatment? None at all." Even though I was there for 5 days it was preventative because my white count was low and I had fever. When he first came into my room the first day, he ask why I was in the hospital and I told him "I had no idea? " I felt fine. Now after being there a few days with them waking you up all night, wound vac on one side, IV on the other, you start feeling a little sicker! I tell you this just as a precaution. If I do end up back in the hospital again, it can be as a preventative measure. I am feeling a little optimistic still because I have been taking antibiotics, so I am hopeful my fever will stop rising and the white count will be acceptable. I am still tired but heck I am always tired! More than anything I am sick of being in this bed, and I am so close to a clean get-away I can almost taste it!
We have Nurse Kathy coming at 7am and with a little luck I'll have a few more days without the wound vac. I surely don't want to be in hospital again with the wound vac. In fact, she always checks my temperature so I think if I have more than the magical number 100.5 I will have to just talk her our of the wound vac if she is so inclined. She is a reasonable person. None-the-less, I will pack an overnight bag just in case. At least this time I would be a "direct admit" to the hospital and not have to go to the ER. That is huge and certainly the worse part of the whole deal.
I have been hybernating for a week now and staying away from just about everybody but Syd, Mitzi and Bob. All of them (except Bob) sat in a chair on the other side of the room -- and Syd even wore a mask since she is a Guidance Counselor in an elementary school and around snotty nosed kids all days. Cindy was coming today but she's been running fever too. She has been such a trooper -- been here for every "week after chemo" and surgery and it is killing her to not be here now. She just went to have blood work to see if she has an infection, so I know she is still going to try to come if she does not, but she does not need to do so. Last timeI had a little hair and she was great getting me shampooed and cleaned up in the hospital everyday among other things. With her there the nurses did not really bother ,so it was important. Good thing I have no hair and can just run a washcloth over my head with a slight amount of shampoo. I will miss her company but it is just not good for her to be here if she has something.
So on a good note, I am dreaming of next week. I start feeling better, can get out more, drive a little -- maybe even get my nails done. And hopefully it only gets better from there. This morning when I could not sleep I started planning all the things I was going to pack up to move partially back into my office (cube) at work. I will probably work out of both places -- home, office and when I am really rolling, 90% in my car. Also I had decided at this morning, I was going to try on old clothes today-- particularly this one dress I wore to a party my family gave Bob and me in Birmingham after we got married. I loved the dress, but it could have looked better. I weighed a good bit more then so it has to look great now. Amazing I have an 8 1/2 year old dress I still like, but by gosh I am going to find some dressy party to wear it too just cuz I can --even if I give it myself. Now, if I have to alter it much--all bets are off. It is time for a new wardrobe anyway. By the way, I have some pretty nice stuff that is too big now that I need to give away. So if you are looking for some slightly used new digs, call me. It is closet cleaning time! In fact, I am going to go try that dress on right now!
Just know this - when I ended up in the hospital last time for 5 days I told the internist that I had one chemo treatment left. I asked him if I should even consider not taking it knowing that again I could end up in the hospital and maybe it was just too much for my body. He rephrased my question and said "You are asking me what kind of hit did your body take as a result of your last chemo treatment? None at all." Even though I was there for 5 days it was preventative because my white count was low and I had fever. When he first came into my room the first day, he ask why I was in the hospital and I told him "I had no idea? " I felt fine. Now after being there a few days with them waking you up all night, wound vac on one side, IV on the other, you start feeling a little sicker! I tell you this just as a precaution. If I do end up back in the hospital again, it can be as a preventative measure. I am feeling a little optimistic still because I have been taking antibiotics, so I am hopeful my fever will stop rising and the white count will be acceptable. I am still tired but heck I am always tired! More than anything I am sick of being in this bed, and I am so close to a clean get-away I can almost taste it!
We have Nurse Kathy coming at 7am and with a little luck I'll have a few more days without the wound vac. I surely don't want to be in hospital again with the wound vac. In fact, she always checks my temperature so I think if I have more than the magical number 100.5 I will have to just talk her our of the wound vac if she is so inclined. She is a reasonable person. None-the-less, I will pack an overnight bag just in case. At least this time I would be a "direct admit" to the hospital and not have to go to the ER. That is huge and certainly the worse part of the whole deal.
I have been hybernating for a week now and staying away from just about everybody but Syd, Mitzi and Bob. All of them (except Bob) sat in a chair on the other side of the room -- and Syd even wore a mask since she is a Guidance Counselor in an elementary school and around snotty nosed kids all days. Cindy was coming today but she's been running fever too. She has been such a trooper -- been here for every "week after chemo" and surgery and it is killing her to not be here now. She just went to have blood work to see if she has an infection, so I know she is still going to try to come if she does not, but she does not need to do so. Last timeI had a little hair and she was great getting me shampooed and cleaned up in the hospital everyday among other things. With her there the nurses did not really bother ,so it was important. Good thing I have no hair and can just run a washcloth over my head with a slight amount of shampoo. I will miss her company but it is just not good for her to be here if she has something.
So on a good note, I am dreaming of next week. I start feeling better, can get out more, drive a little -- maybe even get my nails done. And hopefully it only gets better from there. This morning when I could not sleep I started planning all the things I was going to pack up to move partially back into my office (cube) at work. I will probably work out of both places -- home, office and when I am really rolling, 90% in my car. Also I had decided at this morning, I was going to try on old clothes today-- particularly this one dress I wore to a party my family gave Bob and me in Birmingham after we got married. I loved the dress, but it could have looked better. I weighed a good bit more then so it has to look great now. Amazing I have an 8 1/2 year old dress I still like, but by gosh I am going to find some dressy party to wear it too just cuz I can --even if I give it myself. Now, if I have to alter it much--all bets are off. It is time for a new wardrobe anyway. By the way, I have some pretty nice stuff that is too big now that I need to give away. So if you are looking for some slightly used new digs, call me. It is closet cleaning time! In fact, I am going to go try that dress on right now!
Monday, September 24, 2007
Quick update
Felt pretty good today. While I did not move around a lot -- up and down the stairs 4 times or so, I did work most of the day which felt great and like I was accomplishing something. Amazing how a few phone calls and emails can fill your day. Thank goodness as it kept me for being really bored and I got a lot of stuff done even though I am light-years behind. Funny thing, thanks to many of you (and some amazing new products my company has) I am on goal for work for the year. I can't wait till I can get out of bed and see folks face to face.
I noticed a couple of eyelashes on my cheek this morning and I think the bottom ones are thinning out. I had hoped to skip that this time around. Drat!
Nurse Kathy came today and I have at least till Wednesday without the wound vac. She said there was about a 50/50 chance I may not have to use it again but somehow I doubt it. While it is getting smaller it is still about 3 cm wide so I am not optomistic. We had a heck of a time with the IV pump this weekend and it took 3.45 hours to pump 2 hours worth of fluid on Sunday. I just about went stir crazy lying here although Syd reminding me I would just be lying here anyway. Thanks Syd! I did not have to have fluids today but will tomorrow and hopefully that will be it.
I actually cooked dinner last night and was on my feet for over an hour straight. That was really big for me.
Now I am just focusing on not running fever this week and trying to stay our of Crawford Long!
Keep your fingers crossed!
Hey -- I just realized that other than the pain pill I took before nurse Kathy came, I have not had one all day!
I noticed a couple of eyelashes on my cheek this morning and I think the bottom ones are thinning out. I had hoped to skip that this time around. Drat!
Nurse Kathy came today and I have at least till Wednesday without the wound vac. She said there was about a 50/50 chance I may not have to use it again but somehow I doubt it. While it is getting smaller it is still about 3 cm wide so I am not optomistic. We had a heck of a time with the IV pump this weekend and it took 3.45 hours to pump 2 hours worth of fluid on Sunday. I just about went stir crazy lying here although Syd reminding me I would just be lying here anyway. Thanks Syd! I did not have to have fluids today but will tomorrow and hopefully that will be it.
I actually cooked dinner last night and was on my feet for over an hour straight. That was really big for me.
Now I am just focusing on not running fever this week and trying to stay our of Crawford Long!
Keep your fingers crossed!
Hey -- I just realized that other than the pain pill I took before nurse Kathy came, I have not had one all day!
Saturday, September 22, 2007
At least there is football
I am bored out of my mind, but too tired to do anything -- same ole story. At least there is AL vs GA tonight but I am pretty sure my heart cannot take it if it is like last week's AL vs Arkansas.
I am getting pretty sick of the cooking channels and HGTV. Syd and I played Backgammon yesterday, after Gloria re-introduced me to it one night this week. I could get hooked on it again like I did years ago. I am going to try to get Bob to play today or try to play with Syd again over the internet. What an incredible thing that you can do that! I do not want to play with folks I don't know (via internet). I am not sure why. Once I get my game back I may change my mind. I have a fear of becoming a Backgammon internet junkie, and it is a little too late in my recovery to do that. That should have been four months ago! I've got to get back to work. I am finally realizing I am not going to be able to hit the ground running full force. I thought I could be ready to travel for a few days to So GA the third week in Oct but I see now that is a bit optomistic. I should be able to do some half days I hope for a couple of weeks first. Of course I need to master taking a shower without being out of breath first I think. I am not even sure the wound vac will be gone by then -- heaven help me. It is gone for the weekend however! I am hoping if I do not have fever when I go to the Dr on Wednesday and my numbers are good they will pull this PICC line out for good. They will not do that till they are sure they do not have to admit me to the hospital. I am hoping the antibiotics I am taking now, and avoiding going out will take care of that.
Probably no more blogging this weekend. Nothing new to say. Have a good one.
I am getting pretty sick of the cooking channels and HGTV. Syd and I played Backgammon yesterday, after Gloria re-introduced me to it one night this week. I could get hooked on it again like I did years ago. I am going to try to get Bob to play today or try to play with Syd again over the internet. What an incredible thing that you can do that! I do not want to play with folks I don't know (via internet). I am not sure why. Once I get my game back I may change my mind. I have a fear of becoming a Backgammon internet junkie, and it is a little too late in my recovery to do that. That should have been four months ago! I've got to get back to work. I am finally realizing I am not going to be able to hit the ground running full force. I thought I could be ready to travel for a few days to So GA the third week in Oct but I see now that is a bit optomistic. I should be able to do some half days I hope for a couple of weeks first. Of course I need to master taking a shower without being out of breath first I think. I am not even sure the wound vac will be gone by then -- heaven help me. It is gone for the weekend however! I am hoping if I do not have fever when I go to the Dr on Wednesday and my numbers are good they will pull this PICC line out for good. They will not do that till they are sure they do not have to admit me to the hospital. I am hoping the antibiotics I am taking now, and avoiding going out will take care of that.
Probably no more blogging this weekend. Nothing new to say. Have a good one.
Friday, September 21, 2007
Finally
Well my last day of chemo came and went without a lot of hoopla. I felt pretty yucky most of the day so I was not really in a celibratory mood. I did order breakfast in for all the chemo and radiation staff as a thank you. They gave me this yellow smiley face sheet they'd all signed with nice encouraging words which was very sweet. But so far, it was just another day. I know when I feel better after the next week, I will recognize the enormous milestone I've just passed and be putting on my dancing shoes!
I have a weekend without the wound vac. That slough stuff is thinning out as it was supposed to with the gel pack Nurse Kathy put in, so she is leaving it in for a few more days. The only thing is when that gel goes in initially it stings for a while, but it is still better than a vaccuum and electric cord. Still,, when I wake up in the middle of the night to go to the bathroom, I start looking for all the tubes and appliances I have to take with me. None for a few days anyway.
I do have to have fluids till Tuesday, and hopefully with the antibiotics I am taking as a precaution, that will keep me out of the hospital when my white count goes down next week. I need to be drinking more, but it is so hard. It is weird to feel you skin just getting dry and drawing up but I can. I am just going to have to force feed water down myself-- more tubeless trips to the bathroom.
Syd took the day off and she came to spend the day with me. Cindy will be here sometime next week. My legs hurts a little but, but I am still just really tired. I start out a little nauseaus in the morning, but it is ok now. Tonight I get my Nulasta shot (white count booster) but it makes your bones ache. Mine has not been to bad with this thus far. I do not expect anything worse on the last treatment.
My head is really bald. Last time I had a lot of strands of short hairs that did not fall out. This time it is pure scalp----except this one stupid looking patch of hair that looks like beard on my head. Bob is going to have to shave it off or something. He says it looks like a map of the US on the left side of my head. Anyway, it is going!
Even though I am not ready to get out the bubbly, I am so happy that chemo is over. I can't wait to get that medicine take out of my mouth and this chemo in and out of my body so I can get back to normal---whatever that is.
Yea! It's over!
I have a weekend without the wound vac. That slough stuff is thinning out as it was supposed to with the gel pack Nurse Kathy put in, so she is leaving it in for a few more days. The only thing is when that gel goes in initially it stings for a while, but it is still better than a vaccuum and electric cord. Still,, when I wake up in the middle of the night to go to the bathroom, I start looking for all the tubes and appliances I have to take with me. None for a few days anyway.
I do have to have fluids till Tuesday, and hopefully with the antibiotics I am taking as a precaution, that will keep me out of the hospital when my white count goes down next week. I need to be drinking more, but it is so hard. It is weird to feel you skin just getting dry and drawing up but I can. I am just going to have to force feed water down myself-- more tubeless trips to the bathroom.
Syd took the day off and she came to spend the day with me. Cindy will be here sometime next week. My legs hurts a little but, but I am still just really tired. I start out a little nauseaus in the morning, but it is ok now. Tonight I get my Nulasta shot (white count booster) but it makes your bones ache. Mine has not been to bad with this thus far. I do not expect anything worse on the last treatment.
My head is really bald. Last time I had a lot of strands of short hairs that did not fall out. This time it is pure scalp----except this one stupid looking patch of hair that looks like beard on my head. Bob is going to have to shave it off or something. He says it looks like a map of the US on the left side of my head. Anyway, it is going!
Even though I am not ready to get out the bubbly, I am so happy that chemo is over. I can't wait to get that medicine take out of my mouth and this chemo in and out of my body so I can get back to normal---whatever that is.
Yea! It's over!
Wednesday, September 19, 2007
Starting day three slow
I start and end each day slowly and peak a little in the middle. Nothing really hurts, but I am incredibly tired at the beginning and end of the day. Yesterday, I got a little work done over email and phone. Bob was here for a little while, and a friend, Matt, who is doing a fellowship here came be for a nice visit and chat. That made the afternoon go by faster. That is the problem. The days are so long. I have 7.5 hours for drug and then there is another hour or so of getting ready so
I am usually here from 8:45 to about 5:15pm. I feel asleep in the care on the way home with Loree and went straight to bed. Bob even feed me in bed. I rallied about 8pm and Gloria came over and played Backgammon with me till 10:30. Neither of us had played in about 20 years so we kept having to call Syd to remember how to set up the board. I think we have the hang up of it now. And now Syd and I can play each other on the internet or when she comes over on Friday.
For at least a few days, I DO NOT HAVE THE WOUND VAC. They are trying to get rid of that slough stuff with some gel solution so I will probably not have it though the weekend. No plugs during the weekend (except I will probably need some home IV's for a couple of hours each day). Nurse Kathy says its possible by then the wound could be small enough that I won't need the wound vac anymore but she till not committ to that. I will take the weekend and be happy with that................so far. I do have to take some chemo home with me tonight but it does not have an electrical plug-- just plugged into me. But after tonight no all night apparatisus for a few days.
Day three moving was a little harder than I remembered but I am bouncing back mid morning.
I 'd like to do a few work email and sleep the day away but it doesn't quite work that way. It is just a very long lonely day. But is it day 3 of the last!
I am usually here from 8:45 to about 5:15pm. I feel asleep in the care on the way home with Loree and went straight to bed. Bob even feed me in bed. I rallied about 8pm and Gloria came over and played Backgammon with me till 10:30. Neither of us had played in about 20 years so we kept having to call Syd to remember how to set up the board. I think we have the hang up of it now. And now Syd and I can play each other on the internet or when she comes over on Friday.
For at least a few days, I DO NOT HAVE THE WOUND VAC. They are trying to get rid of that slough stuff with some gel solution so I will probably not have it though the weekend. No plugs during the weekend (except I will probably need some home IV's for a couple of hours each day). Nurse Kathy says its possible by then the wound could be small enough that I won't need the wound vac anymore but she till not committ to that. I will take the weekend and be happy with that................so far. I do have to take some chemo home with me tonight but it does not have an electrical plug-- just plugged into me. But after tonight no all night apparatisus for a few days.
Day three moving was a little harder than I remembered but I am bouncing back mid morning.
I 'd like to do a few work email and sleep the day away but it doesn't quite work that way. It is just a very long lonely day. But is it day 3 of the last!
Monday, September 17, 2007
Just like old times....almost
What a weekend! I ususally start out early on Saturday morning (pre-cancer) playing tennis at 830 0r 9 and go all day on errands, appmts, etc. Then I have ALTA tennis all Sunday afternoon. This weekend was almost like that... almost normal!
About 11 on Saturday Susan took me to watch Bob's tennis match in Alpharetta. He was playing with Stephen, Susan's son. While they played great, as Bob says, "They came in second". It was an almost cool breezy morning, and it was great to be out amongst the living! We were there maybe an hour to an hour and a half. After that, Susan and I went to Publix just to pick up a few things we both needed. I came home and rested for a little more than an hour, and Loree picked me up to go to Rita Ellen's Boutique. We both did some damage there! I bought a couple of skirts and tops so I am ready to go back to work for fall and winter. One skirt I bought, the gray one, I really loved. But more than the skirt, I loved the size----SMALL. I think I would have bought it even if it were ugly as long as it says "small". I can't ever remember wearing a small! Bob is lucky I got out there with so few things -- only cause I got tired and with this wound vac I can't try pants on easily. I will return.
I got to rest for a couple more hours. Trying on clothes is exhausting! Then we went and have a lovely dinner at the Tousets. We had the Alabama game on with no volume. The salmon was delicious, but the game made me a nervous wreck. If you watched it you know why. We left there about 10 pm (from about 6:45 - a very long outting for me). I could not turn the Alabama game on when I first got home as they had been winning and started making some horrible turnovers. Finally after I changed clothes and got in the bed I turned it on and we were losing 38 -31. It was an exciting white knuckle ride till the end, but Bama finally did prevail. It took me about an hour to get my heart rate to an acceptable level.
I thought I would be exhausted all day on Sunday, but I got dressed and watched my tennis team play from 1:30 till about 5:45. Another long day but a fun one. Susan brought me a comfortable chair to sit in and the weather was glorious. There were even a few minutes I thought I needed a blanket.
Today, I started chemo. Before it started they drew labs and told me I was not scheduled to see the Doc (Saba) until next week. Somebody goofed. You always see the Doc before chemo. Besides, he and I had some ground rules I needed to clear up before next week. My chemo nurses got it straightened out, and I got in to see him. We had a long talk about how we could avoid me going back to the ER. I am okay being admitted to the hospital, just not through the ER. So we are starting me on anitbiotics Thursday as a precautionary. Normally I see him for labs the Monday after chemo and that is before my white count gets low. Next week I am going to see him on Wednesday instead. If past history means anything, that is about the time my white count is low and my fever is up. Since he will be in the office and have seen me, he can direct admit me if necessary. So next Wednesday, I am coming with bags packed but praying I do not need them. He says as long as he is here or on call we can do a direct admit. Or I can try telling the on call doc that he said to admit me, not send me to the ER. At any rate, I got my point across, and I believe he will do everything he can to keep me out of the ER.
I wish I had not asked him this but I did. I asked with my history (me thinking clear surgical margins, 100% nacrotic tumor) what my chances of reoccurance were. He said 50% which was shocking to me. Every thing I had seen said if it was not in the lung then chances of it NOT coming back were about 76%. The size of this one dropped it to 50%. He said we are going to be watching it all the time via CT scans with the surgeon and with him every 3 months. I did not realize I would be seeing him that often as well. I asked him if I should be feeling my arms etc for knots and he assured me it would be lungs or the leg and we would watch those areas regularly. It did upset me but he told me not to get hung up on the numbers. The treatment worked well the first time, and if we ever have to, we'll just take it out and do it again. I can't really get hung up on what is going to happen next cause you can worry yourself to death but it is in the back of my mind. I am trying to focus on this week, getting chemo over and seeing if I can manage to end this without being back in the hospital.
In the meantime, I had a wonderful, normal weekend and I cannot wait to have multitudes of them back to back!
Nurse Kathy came at 7 so I had to take a shower (yea) at 630. She had to cut the sponge even smaller which means the wound is continuing to heal. She says it needs to do some sloughing off (or something like that) which is normal. She is contacting the Doc to see about putting a gel pack in for a few days so that can happen. The wound vac would be off during that time (yea) but come back will come back after that but it may give me a little break. I am hoping by the end of the month the wound vac, PICC line, and any major chemo side effects will be almost gone. We are really getting close now!
About 11 on Saturday Susan took me to watch Bob's tennis match in Alpharetta. He was playing with Stephen, Susan's son. While they played great, as Bob says, "They came in second". It was an almost cool breezy morning, and it was great to be out amongst the living! We were there maybe an hour to an hour and a half. After that, Susan and I went to Publix just to pick up a few things we both needed. I came home and rested for a little more than an hour, and Loree picked me up to go to Rita Ellen's Boutique. We both did some damage there! I bought a couple of skirts and tops so I am ready to go back to work for fall and winter. One skirt I bought, the gray one, I really loved. But more than the skirt, I loved the size----SMALL. I think I would have bought it even if it were ugly as long as it says "small". I can't ever remember wearing a small! Bob is lucky I got out there with so few things -- only cause I got tired and with this wound vac I can't try pants on easily. I will return.
I got to rest for a couple more hours. Trying on clothes is exhausting! Then we went and have a lovely dinner at the Tousets. We had the Alabama game on with no volume. The salmon was delicious, but the game made me a nervous wreck. If you watched it you know why. We left there about 10 pm (from about 6:45 - a very long outting for me). I could not turn the Alabama game on when I first got home as they had been winning and started making some horrible turnovers. Finally after I changed clothes and got in the bed I turned it on and we were losing 38 -31. It was an exciting white knuckle ride till the end, but Bama finally did prevail. It took me about an hour to get my heart rate to an acceptable level.
I thought I would be exhausted all day on Sunday, but I got dressed and watched my tennis team play from 1:30 till about 5:45. Another long day but a fun one. Susan brought me a comfortable chair to sit in and the weather was glorious. There were even a few minutes I thought I needed a blanket.
Today, I started chemo. Before it started they drew labs and told me I was not scheduled to see the Doc (Saba) until next week. Somebody goofed. You always see the Doc before chemo. Besides, he and I had some ground rules I needed to clear up before next week. My chemo nurses got it straightened out, and I got in to see him. We had a long talk about how we could avoid me going back to the ER. I am okay being admitted to the hospital, just not through the ER. So we are starting me on anitbiotics Thursday as a precautionary. Normally I see him for labs the Monday after chemo and that is before my white count gets low. Next week I am going to see him on Wednesday instead. If past history means anything, that is about the time my white count is low and my fever is up. Since he will be in the office and have seen me, he can direct admit me if necessary. So next Wednesday, I am coming with bags packed but praying I do not need them. He says as long as he is here or on call we can do a direct admit. Or I can try telling the on call doc that he said to admit me, not send me to the ER. At any rate, I got my point across, and I believe he will do everything he can to keep me out of the ER.
I wish I had not asked him this but I did. I asked with my history (me thinking clear surgical margins, 100% nacrotic tumor) what my chances of reoccurance were. He said 50% which was shocking to me. Every thing I had seen said if it was not in the lung then chances of it NOT coming back were about 76%. The size of this one dropped it to 50%. He said we are going to be watching it all the time via CT scans with the surgeon and with him every 3 months. I did not realize I would be seeing him that often as well. I asked him if I should be feeling my arms etc for knots and he assured me it would be lungs or the leg and we would watch those areas regularly. It did upset me but he told me not to get hung up on the numbers. The treatment worked well the first time, and if we ever have to, we'll just take it out and do it again. I can't really get hung up on what is going to happen next cause you can worry yourself to death but it is in the back of my mind. I am trying to focus on this week, getting chemo over and seeing if I can manage to end this without being back in the hospital.
In the meantime, I had a wonderful, normal weekend and I cannot wait to have multitudes of them back to back!
Nurse Kathy came at 7 so I had to take a shower (yea) at 630. She had to cut the sponge even smaller which means the wound is continuing to heal. She says it needs to do some sloughing off (or something like that) which is normal. She is contacting the Doc to see about putting a gel pack in for a few days so that can happen. The wound vac would be off during that time (yea) but come back will come back after that but it may give me a little break. I am hoping by the end of the month the wound vac, PICC line, and any major chemo side effects will be almost gone. We are really getting close now!
Friday, September 14, 2007
A Good Few Days
I 've felt pretty good the last few days. I still get tired easily and the wound thing is not the most comfortable in the world, but overall not too bad! I am doing every thing I know to do --eat better, take vitamins, drink a lot, to get ready for chemo next week. I am not sure what I can do to really prepare myself, but I am going to try to take advantage of any energy I have and get out a little since I know I will be pretty much confined for a couple of weeks starting Monday. I just hope I can stay out of the hospital ER and get through this last round easily.
Wednesday night Bob noticed I was leaving a trail of hair (albeit short hair) every where I went. So Barber Bob buzzed it all off. It was almost comical. We just did not have all the proper equipment a real barber would have, but we managed with some scissors and an electric razor. It took a while, and the result was the same as the last time I had it buzzed off professionally! Even though my hair was only about an inch long, I had a lot a of it! And thank goodness, a lot of it was really brown. We'll see what happens the next time it comes back in, around Christmas I guess. After he cut my hair, Bob had to "flush my picc line". We have to do that daily. It is like injecting saline solution and heperin though each tube of the to make sure they are fresh and "open" when they need to be accessed. I hope to get that taken out a few days after chemo when they are sure I will not need fluids, antibiotics or anything else. Then, Bob had to try to fix our vaccuum cleaner -- the real one not the wound vacc. What a multi talented guy! Of course the one thing he could not do was the most expensive to fix -- the vaccuum cleaner. Although in the great scheme of things, I have been pretty expensive to fix too!
No big weekend plans--tonight we may try to go to a quick and early dinner with friends if I am up for it. Bob has a tennis match on Saturday and since it is an away match I will not even attempt to go. I may venture out to Publix to buy some chemo snacks for next week. And Sunday I am still hoping to see my tennis team play for an hour or so.
I hate to wish the days away, but that is exactly what I am doing. I would give anything if it were two or three weeks from now. Each day I watch the clock trying to make it go faster just to get this all over with, but I know it will be soon. I just can't wait! Hope your weekend is good!
Wednesday night Bob noticed I was leaving a trail of hair (albeit short hair) every where I went. So Barber Bob buzzed it all off. It was almost comical. We just did not have all the proper equipment a real barber would have, but we managed with some scissors and an electric razor. It took a while, and the result was the same as the last time I had it buzzed off professionally! Even though my hair was only about an inch long, I had a lot a of it! And thank goodness, a lot of it was really brown. We'll see what happens the next time it comes back in, around Christmas I guess. After he cut my hair, Bob had to "flush my picc line". We have to do that daily. It is like injecting saline solution and heperin though each tube of the to make sure they are fresh and "open" when they need to be accessed. I hope to get that taken out a few days after chemo when they are sure I will not need fluids, antibiotics or anything else. Then, Bob had to try to fix our vaccuum cleaner -- the real one not the wound vacc. What a multi talented guy! Of course the one thing he could not do was the most expensive to fix -- the vaccuum cleaner. Although in the great scheme of things, I have been pretty expensive to fix too!
No big weekend plans--tonight we may try to go to a quick and early dinner with friends if I am up for it. Bob has a tennis match on Saturday and since it is an away match I will not even attempt to go. I may venture out to Publix to buy some chemo snacks for next week. And Sunday I am still hoping to see my tennis team play for an hour or so.
I hate to wish the days away, but that is exactly what I am doing. I would give anything if it were two or three weeks from now. Each day I watch the clock trying to make it go faster just to get this all over with, but I know it will be soon. I just can't wait! Hope your weekend is good!
Wednesday, September 12, 2007
Bouncing back
I feel so much better today. Here it is after 1pm, and I have not even thought about a nap. I still look a little sunken in and can tell I just need to be drinking more fluids. Soon it will be champaign that will do the trick because I will be through with all this mess and can celebrate. If all goes well, I will be through with Chemo one week from tomorrow. While I am not looking forward to it, I just can't wait to get it over with.
My scalp is feeling really weird and a little achy to the touch. Every morning I wake up and grab what little hair I have and give it a tug to see if it all comes out. There are a just few strands on the pillow case, sink etc but I am sure the next day or so it will be all over the place --relatively speaking. What a waste of time for it to go to the energy of falling out when it is just going to have to start growing back again in a couple of months! If only it would listen to me.
Nurse Kathy came to day and I continue to heal nicely. Although I probably have at least 3 more weeks with the wound vac -- Fred as we call it. I can't print what I really call it most days.
I keep trying to keep myself busy with work, paying bills, household paperwork to keep my mind off the next couple or weeks. I am hoping to be able to travel overnight for work in late October so I am trying to start planning that without jinxing it! It looks like we are going to be able to go to Destin for Thanksgiving so I just keep focusing on that too. I am probably not supposed to be in the sun so soon after chemo but that time of year the sun is hardly a threat.
And finally, maybe Sunday, I will be able to go watch my tennis team play for an hour or so. We have all new courts, and I have not even been down there yet. And maybe I can even hit a ball or two before the year is over!
My scalp is feeling really weird and a little achy to the touch. Every morning I wake up and grab what little hair I have and give it a tug to see if it all comes out. There are a just few strands on the pillow case, sink etc but I am sure the next day or so it will be all over the place --relatively speaking. What a waste of time for it to go to the energy of falling out when it is just going to have to start growing back again in a couple of months! If only it would listen to me.
Nurse Kathy came to day and I continue to heal nicely. Although I probably have at least 3 more weeks with the wound vac -- Fred as we call it. I can't print what I really call it most days.
I keep trying to keep myself busy with work, paying bills, household paperwork to keep my mind off the next couple or weeks. I am hoping to be able to travel overnight for work in late October so I am trying to start planning that without jinxing it! It looks like we are going to be able to go to Destin for Thanksgiving so I just keep focusing on that too. I am probably not supposed to be in the sun so soon after chemo but that time of year the sun is hardly a threat.
And finally, maybe Sunday, I will be able to go watch my tennis team play for an hour or so. We have all new courts, and I have not even been down there yet. And maybe I can even hit a ball or two before the year is over!
Monday, September 10, 2007
A lost week
That is the only way I know how to describe the last week - lost. While I was extremely tired and weak, I just did not feel that bad but I lost a whole week - two, if you count chemo the week before. I had machines on both sides of my body, the wound vac and continous IV's, doing more than laying (and watching tennis, some football) there was difficult. Thank goodness for Cindy, Syd and Bob or I would have just been out of my mind. I was so glad to finally get to come home yesterday, although I realize I do not do much more than lay here either. At least today, I do feel I can do some stuff on the computer. Conversations more than about 5 minutes wear me out. The 2 units of blood I got Saturday may not have kicked in yet. I can't believe I have chemo again next week and will start this darn process all over again. BUT this time is the last time, so I surely do not want to delay it. I would do it today if I could. They have wanted to admit me (to the hospital as an in-patient) to have chemo, but I never let them do it. If I do start feeling yucky this time I may just go ahead and let me check in. It is no Ritz Carlton, but if they are able to give me fluids during the night between treatments or blood, and it makes the week after better I may consider. I am going to pack a bag just in case, while I would much rather be at home.
I am really over watching tennis on TV. Actually, I am really over TV period. I just want to go back to work, go to the grocery store, cook dinner - or eat out, go to a movie, etc. I realized last night, in all of 2007, I have not spent one night anywhere but home or Crawford Long Hospital. And they do not even give frequent visitor miles. It is really bad when the Wound Care Nurse remembers you from your visit 5 months earlier.
My scalp is tingley. When I plucked eyebrows last night, they put up no fight. So my 1 inch hair is preparing to leave me soon. It was just getting to an awkward length anyway!
I am really over watching tennis on TV. Actually, I am really over TV period. I just want to go back to work, go to the grocery store, cook dinner - or eat out, go to a movie, etc. I realized last night, in all of 2007, I have not spent one night anywhere but home or Crawford Long Hospital. And they do not even give frequent visitor miles. It is really bad when the Wound Care Nurse remembers you from your visit 5 months earlier.
My scalp is tingley. When I plucked eyebrows last night, they put up no fight. So my 1 inch hair is preparing to leave me soon. It was just getting to an awkward length anyway!
Saturday, September 8, 2007
Saturday night (no) fever
Seems like only yesterday I was sitting here in hospital doing Geri's blog, . . .wait, it was only yesterday. We're still here, but the temp. has been normal all today and the white cell numbers are improving so we should be going home tomorrow. Geri had two units of blood last night and is still on fluids and antibiotics so things are moving in the right direction.
Sister Cindy was here from Alabama to help this last week, although we didn't realize Geri would be in hospital most of the time, so she had to drive downtown to administer the TLC, which she did very well. She left yesterday to go home to cheer on Bama against Vandy today. It must have worked because they won. Syd took over Geri-care today so I could loose my season- opener ALTA tennis match this morning and do other stuff.
We are getting ready to watch the US Open women's final now. Hopefully we will be home in time for the men's tomorrow.
Sister Cindy was here from Alabama to help this last week, although we didn't realize Geri would be in hospital most of the time, so she had to drive downtown to administer the TLC, which she did very well. She left yesterday to go home to cheer on Bama against Vandy today. It must have worked because they won. Syd took over Geri-care today so I could loose my season- opener ALTA tennis match this morning and do other stuff.
We are getting ready to watch the US Open women's final now. Hopefully we will be home in time for the men's tomorrow.
Friday, September 7, 2007
Another unplanned week
Well, nothing goes as planned. Sataurday night the wound vac said the tubing was blocked again so we redid the dressing and a new tube. Sunday was uneventful. Geri had IV fluids at home and watched some tennis. Monday the home care nurse came and re-packed the wound. Tuesday we has a scheduled visit to the cancer clinic for blood work. Geri's numbers were low so they gave her fluids there.
Tuesday night Geri started running a temperature, which is not uncommon the week after chemo, but anything over 10o.5F they want to know about. At 4:00am the alarm on the wound vac went off. After three re-starts it was still having problems so we removed the tube/dressing and put on a regular dressing as we knew Kathy would be there at 10:00am. The problem was the vacuum sucks skin at the edge of the wound into the tube and blocks it. The cavity is getting smaller so the edge of the opening is closer to the vac tube and more likely to get drawn in. We called the cancer clinic early Wednesday to report the elevated temp. Kathy came a did the wound proceedure, and then we started Geri on more IV fluids for 2 hours. The clinic called back and said the Dr. wanted Geri to go to the ER for possible addmission for antibiotics and fluids.
As soon as the IV finished we headed for the ER and arrived at 2:00pm. Two and a half hours later we see the triage nurse, two hours later we see a doctor. They start Geri on antibiotics and she finally gets to a room at 8:45pm (this was a lot faster than the last time in ER for the port wound infection). Geri has been on saline+ potasium and two types of IV antibiotics since admittance and they are going to give her a blood transfusion this evening. The nurse has just been to draw blood to check the antibiotic levels (vanc trough for you medical buffs) but is having difficulty getting any blood out the PICC line.
Geri is feeling tired but not too bad generally. She is getting fed up with being in hospital and wants to go home, but wants to be well when she does so we don't have to come back. All being well she should be out of the hospital in the next couple of days.
Geri thanks you all for your prayers and best wishes but while she is in this neutrapenic state (low white cell count so vulnerable to infections) she can't have visitors, or fresh fruit, vegetables or flowers.
Tuesday night Geri started running a temperature, which is not uncommon the week after chemo, but anything over 10o.5F they want to know about. At 4:00am the alarm on the wound vac went off. After three re-starts it was still having problems so we removed the tube/dressing and put on a regular dressing as we knew Kathy would be there at 10:00am. The problem was the vacuum sucks skin at the edge of the wound into the tube and blocks it. The cavity is getting smaller so the edge of the opening is closer to the vac tube and more likely to get drawn in. We called the cancer clinic early Wednesday to report the elevated temp. Kathy came a did the wound proceedure, and then we started Geri on more IV fluids for 2 hours. The clinic called back and said the Dr. wanted Geri to go to the ER for possible addmission for antibiotics and fluids.
As soon as the IV finished we headed for the ER and arrived at 2:00pm. Two and a half hours later we see the triage nurse, two hours later we see a doctor. They start Geri on antibiotics and she finally gets to a room at 8:45pm (this was a lot faster than the last time in ER for the port wound infection). Geri has been on saline+ potasium and two types of IV antibiotics since admittance and they are going to give her a blood transfusion this evening. The nurse has just been to draw blood to check the antibiotic levels (vanc trough for you medical buffs) but is having difficulty getting any blood out the PICC line.
Geri is feeling tired but not too bad generally. She is getting fed up with being in hospital and wants to go home, but wants to be well when she does so we don't have to come back. All being well she should be out of the hospital in the next couple of days.
Geri thanks you all for your prayers and best wishes but while she is in this neutrapenic state (low white cell count so vulnerable to infections) she can't have visitors, or fresh fruit, vegetables or flowers.
Saturday, September 1, 2007
Okay Saturday
I start out the mornings pretty puny but usually feel better by mid day. Nothing really hurts, I am just tired I guess. I am sleeping so-so. Besides the wound vac, when they flush all these fluids through me, I am up all night going to the bathroom. Have to unplug and carry the wound vac is just one more inconvenice.
I saw the surgeon (from now on referred to Doc O) on Friday. He says I am healing nicely, but I will have the wound vac for a while. I told him I was through with chemo (all being well) Sept 20 but he said the wound vac would not be gone by then. Since chemo kills your immune system I assume it will slow the healing process. Nurse Kathy came yesterday and said I had a little ulcer (nothing to worry about except that it stings and hurts) at the edge of the wound. I had felt some stinging so I knew something was up. It is just one of those things that happens when you are recovering from surgery, especially after having radiation. Doc O says he is in charge of me with regards to having follow up CT scans etc and that we will be "knowing each other the next 10 years". I am really counting on that. I wanted to say, "Oh good. Then I will be around when you turn gray." but decided not too. He is young but he is really good.
I am in the process of getting my fluids for today. It is only 2 hours. The nurse told me 4. I am not sure if she was just wrong or I am not getting enough! Guess I better drink a lot just in case. I have been watching so much tennis and am actually getting bored with it. I 'd rather be playing. Bama football is on Pay Per View but we did not so I guess I won't see that. I am actually going to try to cook fish taco's with peach salsa if I can't get Bob off to Publix with a list soon. I kind of want to go with him, but I guess I should not get out amongst the germs right now. I am just so darn bored.
Will probably not update anymore during the weekend so don't worry if you don't see anything.
Have a nice holiday weekend.
I saw the surgeon (from now on referred to Doc O) on Friday. He says I am healing nicely, but I will have the wound vac for a while. I told him I was through with chemo (all being well) Sept 20 but he said the wound vac would not be gone by then. Since chemo kills your immune system I assume it will slow the healing process. Nurse Kathy came yesterday and said I had a little ulcer (nothing to worry about except that it stings and hurts) at the edge of the wound. I had felt some stinging so I knew something was up. It is just one of those things that happens when you are recovering from surgery, especially after having radiation. Doc O says he is in charge of me with regards to having follow up CT scans etc and that we will be "knowing each other the next 10 years". I am really counting on that. I wanted to say, "Oh good. Then I will be around when you turn gray." but decided not too. He is young but he is really good.
I am in the process of getting my fluids for today. It is only 2 hours. The nurse told me 4. I am not sure if she was just wrong or I am not getting enough! Guess I better drink a lot just in case. I have been watching so much tennis and am actually getting bored with it. I 'd rather be playing. Bama football is on Pay Per View but we did not so I guess I won't see that. I am actually going to try to cook fish taco's with peach salsa if I can't get Bob off to Publix with a list soon. I kind of want to go with him, but I guess I should not get out amongst the germs right now. I am just so darn bored.
Will probably not update anymore during the weekend so don't worry if you don't see anything.
Have a nice holiday weekend.
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