For those of you keeping track - I did discover the AWOL magic mouthwash. It was in my box of laundry detergent which was sitting above my dryer. Amazing that I didn't think to look above my dryer for the bottle The key thing to note (rather than magic mouthwash moving by itself) is that the detergent usually lives on the bottom of my closet. The person who cleans my house will often move things around and he had come earlier that week. So the magic mouthwash must have fallen off a shelf into the box. Note it was discovered only after I had been given another bottle of the stuff at the hospital so I now have 3 bottles and discovering the awol first bottle has no real useful purpose. (Once I have a bottle at home and a bottle at work, not sure I go anywhere else.)
Otherwise, I'm still feeling pretty good, tired much of the time even after sleeping 8 hours but generally okay. Debbie (a friend from CA) is out visiting this weekend and I'm hopeful I will get actual writing done on research projects at the beginning of this week before chemo 8 on Thursday.
Saturday, March 28, 2009
Wednesday, March 25, 2009
Bles 2 (or a weekend away continued)
I finally was brought up by someone in the ER once I asked if I could just walk myself upstairs. After waiting an hour for an orderly and becoming increasingly aware of how nuts the ER was it seemed like getting me out of the ER and freeing up the bed would be good. I also was happy to get settled if I was spending what I thought would be a day or two.
The wing I was in is a clean floor where you need to go through double doors that airlock (you can't open the inner doors until the outer doors are closed and sealed) and taken to my room. It was a lovely room - bigger than I expected and private (no immune system means no roommates). I had my temperature taken and then vitals were taken every 4 hours - and blood was drawn at midnight and I was given more antibiotics at 3:30. I didn't really sleep much Friday night. Everyone was very nice and good at what they did. Saturday I still had no fever during the day and was still wondering if we had overreacted by admitting me. My friend Taleen was in town from Massachusetts and came to visit me as did Melissa, Bosoxfox. I had thought making people who were in town come to my house and go eat somewhere within a 2 block radius was sad, but having people from out of town come to visit in the hospital seemed like a new low in my invalid status, especially when I still felt pretty good - or at least not bad. I was mainly feeling tired and somewhat concerned about whether I would be fed.
I hadn't gotten in the system since I arrived so late, no dinner - at breakfast I was served the food ordered by the previous patient but then the person who delivered the food never came back to take my order. I hadn't paid attention at lunch since Taleen and BoSoxFox had brought me food and drink but by 3:30 it occurred to me I might not get dinner. BoSoxFox had left at this point (she had come early and spent much of the day in the lovely Bles 2). But Taleen assured me she'd get me food before leaving if they hadn't confirmed my meal. They ended up calling at about 4. By this time I was actually starting to feel bad, at the 4pm vital reading I was starting to get a fever, not beyond the 100.4 (or 38 degrees centigrade) that seemed like the magic number but definitely on its way up. Taleen left a little before 5, food came right after 5 and after eating the food (not terrible for institutional food but that might have been the fever and hunger) was basically ready for bed. After the 7pm dose of antibiotics when they did my 8pm reading I was officially feverish and suffering from neutropenic fever. There really should be an organ chord or some other way to emphasize how things then changed. Doctors were called, blood was drawn and a flurry of activity commenced including having a chest x-ray done in my bed. Yes they have portable x-ray machines and I got to have one. That was better than the futile attempt to get blood out of me from my veins while I was weak, feverish and laying down. After looking at various veins and trying twice in my hand I decided the mediport blood sample was probably sufficient. The second time the nurse actually had the needle in the vein and no blood was entering - not exactly sure what that meant in terms of my blood flow but given the number of negative blood cultures they had taken I decided one sample would have to do. This is also the point where it occurred to me I could say no. After the tests (which all came back negative) - they gave me some tylenol and I went to bed. Not sure if it was the ativan, the fever or just general exhaustion but I slept an amazing amount and pretty well given the interruptions and iv's that were attached at different points. Friday night I would have sworn there would be no way for me to sleep when I was actually hooked up and having something delivered to my mediport but Saturday night they would come in - change something and I'd go right back to sleep. The nurses mentioned patients sleeping through getting hooked up or having blood drawn but I never got to that point.
So going to the hospital did make sense - I was feverish again at 4am but was given more tylenol and was then fever free most of the day. This did mean that I had to accept I could be in the hospital longer than the day or two I thought. Sunday BoSoxFox went to my house and brought me more supplies and my friend Sue also came over. The docs said my levels were still low (80) but seemed poised to take off (they said this Saturday too). To not be neutropenic they needed to be over 1000. Sunday I felt okay during the day but then mid-afternoon my hips really started to hurt - I took this as a good sign that maybe my bone marrow was kicking in and making all sorts of new blood cells. Sue and Melissa left, I took an oxycodone and tried to focus on the positive potential causes of hip pain. Unfortunately, I ended up running a slight fever Sunday night during the antibiotic. Not sure if it was related to the antibiotic I think I'm allergic to, or my body working hard making white cells or the fact that I seemed to make a lot of them. My body once activated it seems produces a ton of cells. I went from 80 to 2800 in a little more than 24 hours. (They did my blood work at 5 in the morning after I blamed the antibiotic and wanted to move the timing of my antibiotics so the doctors might be around if my temperature spikes were caused by the antibiotic.) Sunday night I also refused to let them even try getting the second blood culture. In some ways the worst part of this and every doctors visit is the crap shoot and pain that accessing my veins seems to be. It always hurts and only seems to work half the time.
Monday I woke up feeling great - I knew I was no longer neutropenic but they had to wait for the blood work to come back. I think they were a little taken aback with how high my levels were- I effectively went from no immune system to high-normal in a day. Monday I walked laps (20 laps equalled a mile) an incredibly boring activity - where I always wondered if I was in the way. Rosanne came and visited and I ended up talking with the nurses and my med student a lot. I probably could have pushed for a late dismissal Monday night but thought it was reasonable for them to want to keep me overnight given that is when I seemed to have fever. Of course it seemed like we were all in agreement that I would be released the next morning. I didn't realize how long getting the paper work could be.
After an uneventful night where my biggest problem was getting someone to unhook me in the morning so I could take a shower (the night nurse assigned to me, also had other patients who needed much more care, including one who was receiving chemo). I was ready to be out of there by lunch. At 10:30 all the doctors had been by at least once and said I was ready to go and they were filling out my paper work. By 1 the intern had said I could call my ride and the paperwork was ready to go. The medical team then ended up busy in the ER - the medical student assigned to my case delivered the papers but they hadn't been signed. I ended up leaving after 3. They didn't the bed but I really don't understand how it could have taken so long given we were all in agreement the day before I would be ready to go.
In the end I should have pushed to be released Monday night - but I am now home, I got to sleep without blood being drawn or vitals taken every 4 hours. I did wake up in the night and kind of missed some of the beeping but mainly was a little sad when I woke up this morning and realized I had to get up and make my own breakfast. No bedside delivery at home. Now I am off to fill my prescriptions and check in in the office. (People have made some food I want to pick up - thank you Elaine, and I need to fax something off.) I will almost surely have a fairly mellow week.
After some discussion with my doctor it does look like I am going to have my final chemo. I just will end up getting some shots of the neupogen to hopefully avoid getting neutropenic next time.
The wing I was in is a clean floor where you need to go through double doors that airlock (you can't open the inner doors until the outer doors are closed and sealed) and taken to my room. It was a lovely room - bigger than I expected and private (no immune system means no roommates). I had my temperature taken and then vitals were taken every 4 hours - and blood was drawn at midnight and I was given more antibiotics at 3:30. I didn't really sleep much Friday night. Everyone was very nice and good at what they did. Saturday I still had no fever during the day and was still wondering if we had overreacted by admitting me. My friend Taleen was in town from Massachusetts and came to visit me as did Melissa, Bosoxfox. I had thought making people who were in town come to my house and go eat somewhere within a 2 block radius was sad, but having people from out of town come to visit in the hospital seemed like a new low in my invalid status, especially when I still felt pretty good - or at least not bad. I was mainly feeling tired and somewhat concerned about whether I would be fed.
I hadn't gotten in the system since I arrived so late, no dinner - at breakfast I was served the food ordered by the previous patient but then the person who delivered the food never came back to take my order. I hadn't paid attention at lunch since Taleen and BoSoxFox had brought me food and drink but by 3:30 it occurred to me I might not get dinner. BoSoxFox had left at this point (she had come early and spent much of the day in the lovely Bles 2). But Taleen assured me she'd get me food before leaving if they hadn't confirmed my meal. They ended up calling at about 4. By this time I was actually starting to feel bad, at the 4pm vital reading I was starting to get a fever, not beyond the 100.4 (or 38 degrees centigrade) that seemed like the magic number but definitely on its way up. Taleen left a little before 5, food came right after 5 and after eating the food (not terrible for institutional food but that might have been the fever and hunger) was basically ready for bed. After the 7pm dose of antibiotics when they did my 8pm reading I was officially feverish and suffering from neutropenic fever. There really should be an organ chord or some other way to emphasize how things then changed. Doctors were called, blood was drawn and a flurry of activity commenced including having a chest x-ray done in my bed. Yes they have portable x-ray machines and I got to have one. That was better than the futile attempt to get blood out of me from my veins while I was weak, feverish and laying down. After looking at various veins and trying twice in my hand I decided the mediport blood sample was probably sufficient. The second time the nurse actually had the needle in the vein and no blood was entering - not exactly sure what that meant in terms of my blood flow but given the number of negative blood cultures they had taken I decided one sample would have to do. This is also the point where it occurred to me I could say no. After the tests (which all came back negative) - they gave me some tylenol and I went to bed. Not sure if it was the ativan, the fever or just general exhaustion but I slept an amazing amount and pretty well given the interruptions and iv's that were attached at different points. Friday night I would have sworn there would be no way for me to sleep when I was actually hooked up and having something delivered to my mediport but Saturday night they would come in - change something and I'd go right back to sleep. The nurses mentioned patients sleeping through getting hooked up or having blood drawn but I never got to that point.
So going to the hospital did make sense - I was feverish again at 4am but was given more tylenol and was then fever free most of the day. This did mean that I had to accept I could be in the hospital longer than the day or two I thought. Sunday BoSoxFox went to my house and brought me more supplies and my friend Sue also came over. The docs said my levels were still low (80) but seemed poised to take off (they said this Saturday too). To not be neutropenic they needed to be over 1000. Sunday I felt okay during the day but then mid-afternoon my hips really started to hurt - I took this as a good sign that maybe my bone marrow was kicking in and making all sorts of new blood cells. Sue and Melissa left, I took an oxycodone and tried to focus on the positive potential causes of hip pain. Unfortunately, I ended up running a slight fever Sunday night during the antibiotic. Not sure if it was related to the antibiotic I think I'm allergic to, or my body working hard making white cells or the fact that I seemed to make a lot of them. My body once activated it seems produces a ton of cells. I went from 80 to 2800 in a little more than 24 hours. (They did my blood work at 5 in the morning after I blamed the antibiotic and wanted to move the timing of my antibiotics so the doctors might be around if my temperature spikes were caused by the antibiotic.) Sunday night I also refused to let them even try getting the second blood culture. In some ways the worst part of this and every doctors visit is the crap shoot and pain that accessing my veins seems to be. It always hurts and only seems to work half the time.
Monday I woke up feeling great - I knew I was no longer neutropenic but they had to wait for the blood work to come back. I think they were a little taken aback with how high my levels were- I effectively went from no immune system to high-normal in a day. Monday I walked laps (20 laps equalled a mile) an incredibly boring activity - where I always wondered if I was in the way. Rosanne came and visited and I ended up talking with the nurses and my med student a lot. I probably could have pushed for a late dismissal Monday night but thought it was reasonable for them to want to keep me overnight given that is when I seemed to have fever. Of course it seemed like we were all in agreement that I would be released the next morning. I didn't realize how long getting the paper work could be.
After an uneventful night where my biggest problem was getting someone to unhook me in the morning so I could take a shower (the night nurse assigned to me, also had other patients who needed much more care, including one who was receiving chemo). I was ready to be out of there by lunch. At 10:30 all the doctors had been by at least once and said I was ready to go and they were filling out my paper work. By 1 the intern had said I could call my ride and the paperwork was ready to go. The medical team then ended up busy in the ER - the medical student assigned to my case delivered the papers but they hadn't been signed. I ended up leaving after 3. They didn't the bed but I really don't understand how it could have taken so long given we were all in agreement the day before I would be ready to go.
In the end I should have pushed to be released Monday night - but I am now home, I got to sleep without blood being drawn or vitals taken every 4 hours. I did wake up in the night and kind of missed some of the beeping but mainly was a little sad when I woke up this morning and realized I had to get up and make my own breakfast. No bedside delivery at home. Now I am off to fill my prescriptions and check in in the office. (People have made some food I want to pick up - thank you Elaine, and I need to fax something off.) I will almost surely have a fairly mellow week.
After some discussion with my doctor it does look like I am going to have my final chemo. I just will end up getting some shots of the neupogen to hopefully avoid getting neutropenic next time.
A weekend away
It might be that everyone I know is planning and taking somewhat exciting trips and letting me know about it but apparently my body decided it needed some tlc and attention too. Apparently the place to get that kind of attention turned out to be a clean floor at Georgetown Hospital.
While I don't think Fred was responsible for my thrush - he apparently is very effective at killing things in my body. After spending most of the week feeling pretty tired and weak and dealing with the thrush, I had my blood taken Thursday. Parking a block further from the hospital and walking to the hospital (3 blocks) and then through the hospital, getting blood drawn and then walking back was totally exhausting. I drove to work and spent the day having various meetings but constantly commenting about how tired I felt. Finally at 3:00 I headed home (note I had worked about a 1/2 day) and had a phone call from my case manager saying I was neutropenic - or I effectively had no neutrophils (a type of white blood cells) and pretty much no white blood cells at all so no immune system. This is the point where avoiding infection is critical and monitoring for any fever is crucial. The lack of a system to fight anything means any infection can get serious fast. A fever of 100.6 means automatic hospital stay - Thursday afternoon I was at 99 and it seemed rising. Friday morning I had a temperature of 100.2 and then 100.3 about an hour apart so I called into Dorothy. My oncologist decided I should be admitted so then I was home, paranoid and waiting for a bed. This was all done by about 10:30 - after a couple of calls to tell me we were still waiting, Dorothy told me to head to the ER where they would start antibiotics. It was then 3:30.
Of course, by then my fever was back down, I was wondering if we were overreacting and didn't really want to go to the hospital, especially the ER. Jason, my upstairs neighbor and friend took me to the ER which was totally packed. After fitting me with a mask that apparently is what they wear when treating tuberculosis patients I was sent back into the waiting room. I'm not sure I ever felt so panicked in my life, I'm sure I must have but sitting in a room full of people who you know are sick when you know you have no immune system is not fun. Of course it could have been the mask but I think I may have started hyper-ventilating a couple of times. I was also ready to bolt. I spoke to Dorothy who told me I had a bed and I should stay - apparently she had been spending the day getting beds assigned and then taken away by other departments but there was a bed on the cancer/clean floor that was mine.
I stayed in the ER - we were brought back and put in a curtained area by 5 or so and then more waiting and tests were done. They drew more blood - from both the mediport and from a vein, urine sample and chest xray and discussed how we were starting antibiotics. They gave me two - one of which was related to penicillin that I am somewhat allergic to (started my feet and mouth tingling and my feet started feeling swollen) and people would occasionally pop in. I sent Jason back home to his wife and babies at around 6:30 ( what does it say about their life that the er seemed more calm than day to day life with babies?) and hung out. I signed papers confirming I was spending the night and checking in around 6 -but didn't get brought upstairs until 10. By 8:30 or 9:00 everything had been done, my room confirmed and I was waiting for an orderly. During this whole time, I had no fever and actually felt pretty good - better it seemed than all the people surrounding me in the ER and I was feeling a little bad for using resources, when they are so busy.
It also seemed pretty inefficient - the ER was crazy busy, people were stacking up in the waiting room - I had a bed assigned upstairs yet was still using ER resources for another 3 hours after they knew where I was going. This also did mean I had a dinner of a nutrigrain bar and a snickers followed later by some cracker jacks. While not exactly a well balanced meal - it turned out most of it was acceptably part of the neutripenic diet.
While I don't think Fred was responsible for my thrush - he apparently is very effective at killing things in my body. After spending most of the week feeling pretty tired and weak and dealing with the thrush, I had my blood taken Thursday. Parking a block further from the hospital and walking to the hospital (3 blocks) and then through the hospital, getting blood drawn and then walking back was totally exhausting. I drove to work and spent the day having various meetings but constantly commenting about how tired I felt. Finally at 3:00 I headed home (note I had worked about a 1/2 day) and had a phone call from my case manager saying I was neutropenic - or I effectively had no neutrophils (a type of white blood cells) and pretty much no white blood cells at all so no immune system. This is the point where avoiding infection is critical and monitoring for any fever is crucial. The lack of a system to fight anything means any infection can get serious fast. A fever of 100.6 means automatic hospital stay - Thursday afternoon I was at 99 and it seemed rising. Friday morning I had a temperature of 100.2 and then 100.3 about an hour apart so I called into Dorothy. My oncologist decided I should be admitted so then I was home, paranoid and waiting for a bed. This was all done by about 10:30 - after a couple of calls to tell me we were still waiting, Dorothy told me to head to the ER where they would start antibiotics. It was then 3:30.
Of course, by then my fever was back down, I was wondering if we were overreacting and didn't really want to go to the hospital, especially the ER. Jason, my upstairs neighbor and friend took me to the ER which was totally packed. After fitting me with a mask that apparently is what they wear when treating tuberculosis patients I was sent back into the waiting room. I'm not sure I ever felt so panicked in my life, I'm sure I must have but sitting in a room full of people who you know are sick when you know you have no immune system is not fun. Of course it could have been the mask but I think I may have started hyper-ventilating a couple of times. I was also ready to bolt. I spoke to Dorothy who told me I had a bed and I should stay - apparently she had been spending the day getting beds assigned and then taken away by other departments but there was a bed on the cancer/clean floor that was mine.
I stayed in the ER - we were brought back and put in a curtained area by 5 or so and then more waiting and tests were done. They drew more blood - from both the mediport and from a vein, urine sample and chest xray and discussed how we were starting antibiotics. They gave me two - one of which was related to penicillin that I am somewhat allergic to (started my feet and mouth tingling and my feet started feeling swollen) and people would occasionally pop in. I sent Jason back home to his wife and babies at around 6:30 ( what does it say about their life that the er seemed more calm than day to day life with babies?) and hung out. I signed papers confirming I was spending the night and checking in around 6 -but didn't get brought upstairs until 10. By 8:30 or 9:00 everything had been done, my room confirmed and I was waiting for an orderly. During this whole time, I had no fever and actually felt pretty good - better it seemed than all the people surrounding me in the ER and I was feeling a little bad for using resources, when they are so busy.
It also seemed pretty inefficient - the ER was crazy busy, people were stacking up in the waiting room - I had a bed assigned upstairs yet was still using ER resources for another 3 hours after they knew where I was going. This also did mean I had a dinner of a nutrigrain bar and a snickers followed later by some cracker jacks. While not exactly a well balanced meal - it turned out most of it was acceptably part of the neutripenic diet.
Monday, March 16, 2009
Tongue-tied and slightly flushed
So far Fred still hasn't produced any obvious allergic reaction but he seems to have wreaked havoc with my mouth - my tongue feels fat and my mouth feels coated and funny. While annoying -it seems more like typical A-C caused side effects. Indeed after checking with both the medical experts in my office (a friend whose sister had gone through chemo and a breast feeding mother) who both thought it was a yeast infection in my mouth, a call into Dorothy (the nurse who handles my case) confirmed it was thrush - a less gross way of saying yeast infection in ones mouth. In theory, I have medicine to handle it, the magic mouthwash that BoSoxFox had picked up last time my mouth felt bad. However, in practice, I don't seem to be able to find said medicine in my bathroom closet and I'm not sure where else I would have stored a bottle of liquid goo. I have ordered a refill but it won't be ready until morning, at which point I'm guessing the current bottle of magic mouthwash will show up. Maybe that's why it's magic.
I guess when my mouth started bothering me I should have realized that would be the first step but the stuff tastes gross and leaves my mouth kind of numb. The thought of having a numb mouth while drooling seems horrible but if it cures it - it's worth it.
Otherwise - besides being a little flushed on Friday and Saturday, things seem okay. So besides my apparently being a little infatuated with Fred we are getting along fine. (Of course with yeast in my mouth - its not like I'm going to find a less toxic fella to hang out with.)
That's the current update - I will report back when my mouth is only dirty from what it says rather than what it grows.
I guess when my mouth started bothering me I should have realized that would be the first step but the stuff tastes gross and leaves my mouth kind of numb. The thought of having a numb mouth while drooling seems horrible but if it cures it - it's worth it.
Otherwise - besides being a little flushed on Friday and Saturday, things seem okay. So besides my apparently being a little infatuated with Fred we are getting along fine. (Of course with yeast in my mouth - its not like I'm going to find a less toxic fella to hang out with.)
That's the current update - I will report back when my mouth is only dirty from what it says rather than what it grows.
Thursday, March 12, 2009
Fred seems okay
I had treatment number 7 today. My doctor is happy with my progress and Fred (Taxotere) seems much better behaved than his brother (Taxol) though I am going to have to reserve total judgement until the megadoses of steroids are out of my body. (I think of them as my chaperone; that seem to make everything peppier when they are in my body.)
This past weekend was fun with Ellen visiting and lots of time with her and Tracy on Saturday and then my parents showed up on Sunday and I had a good visit with them. (They were in New York and drove down for Sunday to Monday.) My visits basically involved eating and sitting around talking. We did go to the Philips collection on Sunday and walked a few blocks to restaurants - but in the end minimal activity tired me out. I did manage to have a few (3 )days without any cancer related drugs in my body and have been fever free since Friday or Saturday I think. Most interesting comment was somehow my dad hadn't realized I would be bald and kept commenting on how i changed my hair. Yes it is different-- it detaches from my head.
I worked Tuesday, and then Wednesday everything changed -- nothing like taking double doses of steroids. I've been meaning to go shopping and do laundry for the last 2 weeks - give me steroids - I sent out things at work, left at 7, went to Trader Joes and then did 3 loads of laundry. I also was way too hyped up to sleep last night but that didn't really break my buzz and poor atavan didn't stand a chance. I basically slept about 2 hours last night but was pretty peppy most of the day. Steroids and nerves a powerful combination.
I took two more pills this morning and Rosanne took me to G-town. The 8:30 doctor's appointment went well - she said I could in theory travel to Paris at the end of April - and thought things looked good. Somehow it took forever to do the blood work but we were upstairs by 9:45 for my 9:30 chemo. Rosanne then went and bought coffee - bless her- and we ended up waiting for a chair and then for the blood work to get done. But taking the steroids orally meant that I only had one pre-chemo medicine - an anti-nauseal medicine and then Fred. Well he was way different than his brother - first of all he's quick - 1 hour vs 3 hours. He also didn't feel a need to instantly put a metally gross taste in my mouth. No flushing head, no reflux - he just slowly dripped in and we were on our way and I was home by 1:30.
So as of now all things seem good. No side effects, no rash thus far, so things seem okay, though it is early. The double dose steroids are yesterday, today and tomorrow so I feel like I should wait and see what happens after I stop the steroids and see what I feel like then. Now I'm just excited that I am tired and hopefully will get to sleep soon. Trying to figure out if I need the atavan or if exhaustion will kick in and send me to sleep.
Today I got some work done and spoke to some people for work, as well as doing random work related things last night in the wee hours.
Anyway so March is looking good for now and hopefully I will get to go somewhere in April before surgery at the beginning of May. Paris might not happen as I think I need to use a frequent flyer ticket and the United dates I found yesterday seem gone. But I'm hopeful I can go somewhere before i have surgery.
Kim
This past weekend was fun with Ellen visiting and lots of time with her and Tracy on Saturday and then my parents showed up on Sunday and I had a good visit with them. (They were in New York and drove down for Sunday to Monday.) My visits basically involved eating and sitting around talking. We did go to the Philips collection on Sunday and walked a few blocks to restaurants - but in the end minimal activity tired me out. I did manage to have a few (3 )days without any cancer related drugs in my body and have been fever free since Friday or Saturday I think. Most interesting comment was somehow my dad hadn't realized I would be bald and kept commenting on how i changed my hair. Yes it is different-- it detaches from my head.
I worked Tuesday, and then Wednesday everything changed -- nothing like taking double doses of steroids. I've been meaning to go shopping and do laundry for the last 2 weeks - give me steroids - I sent out things at work, left at 7, went to Trader Joes and then did 3 loads of laundry. I also was way too hyped up to sleep last night but that didn't really break my buzz and poor atavan didn't stand a chance. I basically slept about 2 hours last night but was pretty peppy most of the day. Steroids and nerves a powerful combination.
I took two more pills this morning and Rosanne took me to G-town. The 8:30 doctor's appointment went well - she said I could in theory travel to Paris at the end of April - and thought things looked good. Somehow it took forever to do the blood work but we were upstairs by 9:45 for my 9:30 chemo. Rosanne then went and bought coffee - bless her- and we ended up waiting for a chair and then for the blood work to get done. But taking the steroids orally meant that I only had one pre-chemo medicine - an anti-nauseal medicine and then Fred. Well he was way different than his brother - first of all he's quick - 1 hour vs 3 hours. He also didn't feel a need to instantly put a metally gross taste in my mouth. No flushing head, no reflux - he just slowly dripped in and we were on our way and I was home by 1:30.
So as of now all things seem good. No side effects, no rash thus far, so things seem okay, though it is early. The double dose steroids are yesterday, today and tomorrow so I feel like I should wait and see what happens after I stop the steroids and see what I feel like then. Now I'm just excited that I am tired and hopefully will get to sleep soon. Trying to figure out if I need the atavan or if exhaustion will kick in and send me to sleep.
Today I got some work done and spoke to some people for work, as well as doing random work related things last night in the wee hours.
Anyway so March is looking good for now and hopefully I will get to go somewhere in April before surgery at the beginning of May. Paris might not happen as I think I need to use a frequent flyer ticket and the United dates I found yesterday seem gone. But I'm hopeful I can go somewhere before i have surgery.
Kim
Thursday, March 5, 2009
Avoiding the false positive and being too negative
I was really happy not to have chemo today and spent much of the day hoping that my fever was gone. Unfortunately, my temperature was up (99.8) at about 6 pm tonight. I have been feeling okay, if I was pretty tired after work yesterday and have decided that I need to leave a little earlier to make sure I'm not too wiped. Yesterday it took me a good 5-10 minutes to marshall the energy to walk the 3 blocks home.
I did find out why they take blood cultures from two sites. It isn't that bacteria levels might be different from different places in my blood stream - its because sometimes bacteria from the skin could inadvertently make it into the sample. We all have bacteria on our skin but shouldn't have it in our blood - so this way if one test comes back positive they can figure out if it is from an area that maybe wasn't cleaned enough or a contaminated site or whether you really have bacteria. (Thanks Holly, it helps to have doctor friends.) I am just happy to again believe in the continuity of my blood stream.
I was excited to see Michele Obama visited Miriam's Kitchen, a local food (and more general service) provider for DC's homeless population. This is a great program, that I used to volunteer for. The early hours (volunteers need to be there before 6am) and the fact that certain activities like cleaning the pots and pans was hard on my back has meant I've substituted money for time but feel like services like this and food banks are providing help to so many and are so important right now and receiving less support to provide even more services and it was great to see the people at Miriam's highlighted today.
In these tough times I think its important to realize and help those that are having an even harder time. I'm hoping this might even make me a little less cranky in my day to day life. As part of this I've decided I need to rename taxotere so it doesn't sound like taxol. I might be psyching myself out thinking I will have a negative reaction - so from now on taxotere will be referred to as Fred. Maybe its a little pedestrian as drug names go but if I give him a chance (and clearly given what they are doing to me - all chemo drugs are male) maybe he'll be okay for a couple of dates.
All right - you all had to realize I was losing it a little bit with the naming of the wigs - so why not go ahead and anthropomorphize my chemo treatments too? BTW - Jackie is currently locked in my trunk.
Kim
I'm generally okay - my parents are driving down from NY on Sunday and my friend Ellen is coming in today
I did find out why they take blood cultures from two sites. It isn't that bacteria levels might be different from different places in my blood stream - its because sometimes bacteria from the skin could inadvertently make it into the sample. We all have bacteria on our skin but shouldn't have it in our blood - so this way if one test comes back positive they can figure out if it is from an area that maybe wasn't cleaned enough or a contaminated site or whether you really have bacteria. (Thanks Holly, it helps to have doctor friends.) I am just happy to again believe in the continuity of my blood stream.
I was excited to see Michele Obama visited Miriam's Kitchen, a local food (and more general service) provider for DC's homeless population. This is a great program, that I used to volunteer for. The early hours (volunteers need to be there before 6am) and the fact that certain activities like cleaning the pots and pans was hard on my back has meant I've substituted money for time but feel like services like this and food banks are providing help to so many and are so important right now and receiving less support to provide even more services and it was great to see the people at Miriam's highlighted today.
In these tough times I think its important to realize and help those that are having an even harder time. I'm hoping this might even make me a little less cranky in my day to day life. As part of this I've decided I need to rename taxotere so it doesn't sound like taxol. I might be psyching myself out thinking I will have a negative reaction - so from now on taxotere will be referred to as Fred. Maybe its a little pedestrian as drug names go but if I give him a chance (and clearly given what they are doing to me - all chemo drugs are male) maybe he'll be okay for a couple of dates.
All right - you all had to realize I was losing it a little bit with the naming of the wigs - so why not go ahead and anthropomorphize my chemo treatments too? BTW - Jackie is currently locked in my trunk.
Kim
I'm generally okay - my parents are driving down from NY on Sunday and my friend Ellen is coming in today
Monday, March 2, 2009
Happy March
I am still running fevers off and on but don't feel terrible - and the cipro while I'm not sure it is killing anything isn't producing any new symptoms. I do think it is causing some dry mouth but how that differs from my prior dry mouth isn't clear. I feel okay though am home today because venturing out into the snow covered streets seems a bit ambitious.
I did count and had 11 blood draws in February - if "normal" is once a week (or 4) it means I got to have all sorts of extra blood work done. I did point out that I had a chest x-ray 2 weeks earlier which was totally clear, so did save at least some health care dollars.
I did go get a massage yesterday which felt great - for new agey types my doctor said it is okay and I have enough chemo going through my body I can't imagine stimulating my lymph nodes could do anything but good.
The only problem with all the time I've been spending at home is that I end up listening to a ton of NPR - mostly the fact that each program seems to have shows on similar topics seems okay if a little repetitive but is it really the case that Barbie's 50th anniversary seems to warrant being mentioned and the subject of an hour show on each of the talk shows?
Anyway - I hope those of you venturing forth in the snow are careful. I would be happier if March was warm but I'd take snow and a cessastion of blood work.
Kim
I did count and had 11 blood draws in February - if "normal" is once a week (or 4) it means I got to have all sorts of extra blood work done. I did point out that I had a chest x-ray 2 weeks earlier which was totally clear, so did save at least some health care dollars.
I did go get a massage yesterday which felt great - for new agey types my doctor said it is okay and I have enough chemo going through my body I can't imagine stimulating my lymph nodes could do anything but good.
The only problem with all the time I've been spending at home is that I end up listening to a ton of NPR - mostly the fact that each program seems to have shows on similar topics seems okay if a little repetitive but is it really the case that Barbie's 50th anniversary seems to warrant being mentioned and the subject of an hour show on each of the talk shows?
Anyway - I hope those of you venturing forth in the snow are careful. I would be happier if March was warm but I'd take snow and a cessastion of blood work.
Kim
Subscribe to:
Posts (Atom)
