Apparently having friends and a strong network improves my survival percentages according to a story that was in the New York Times. After counting on my fingers and some of my toes I figure I have more than the 10 friends needed to improve my survival chances over those without a support network, so Thank You all for all your support. I do feel blessed to have the friends, colleagues, family I have and that so many people have been so great during this process.
I'm feeling pretty good - had a good check up with my oncologist and even stayed out past 9:00 on Friday, so things are going pretty well. Thursday, I had a day of medical appointments - oncologist, pre-surgery registration, blood-work and an ultrasound to make sure they can find the tumor on the day of surgery. Besides going from building to building it all went well. My oncologist was great - didn't think any of the remnants of my side effects was troubling, she gave me the number to call to set up an appointment with the radiologists at GW and sent me on my way with some hugs from her and my case manager and a refill prescription for ativan. (I have not taken my anti-anxiety crutch for probably the last week but I'm guessing next week it will be useful to have.)
The pre-surgery appt went fine. They drew blood and I got to have an EKG - my heart is fine after chemo. It is slightly disturbing to get checked for things I hadn't really focussed on as something chemo might mess up (they did check my heart before chemo started). I am happy all seems normal. I also seem to be walking enough for them to feel like things are okay and I didn't need another heart test. This was due to the fact that I am pretty sure I can walk up 2 flights of steps without getting out of breath, though I haven't confirmed this yet. The ultrasound also went well and they can use the ultrasound to place the wire the day of surgery. This was good news as using the ultrasound is easier than if they had to try and insert the wire using the mri. I'm not sure how they place a wire or marker while I am in the mri machine, it seems like it would require someone getting under the machine and I'm not sure how putting wire works while in a machine that heats up metal. But maybe it is plastic wire.
Otherwise life has been good if pretty warm here in DC. I went to a fundraiser Friday night and even walked back and forth - (about a half mile) and walked back from lunch one day this weeked which was probably over a mile. I'm excited at the idea of walking to and/or from work on a regular basis even if I haven't done it on a consistent basis, yet. (It might seem odd to be able to walk in one direction but I figure I can drive one day, walk home and leave my car parked by work and walk in the following day.) Yes the point is to set easily reachable goals. I also hope to finish off three papers this week but that seems much less attainable than the walking a mile a day. :)
Anyway - I hope you all had a good weekend and week.
Kim
Sunday, April 26, 2009
Tuesday, April 14, 2009
Good News on a Rainy Day
I had an appointment with my surgeon today. The tumor has shrunk to a mass that is 8x12x14 mm or much smaller and about 1.4 cm. There is an additional surrounding area but the whole thing is about 26 mm or much smaller and it means I am still scheduled for a lumpectomy :). My doctor has a court appearance (on behalf of a patient) May 1 so the surgery is currently scheduled for May 8. (She does surgeries on Fridays.) My lymph nodes also look clear and smaller than when I had the MRI in the Fall. So the chemo has done what we were hoping it would do.
Otherwise, I seem to be doing better. I stopped having fevers after Thursday but that was related to the white blood cell production and my numbers seem high. I still get tired easily, yesterday working a whole day just about exhausted me but in general I feel pretty good and like myself. My brain seems to be functioning and I'm hopeful that I can even start walking more than a couple of blocks but that might be asking a lot.
Anyway, I'm hoping residual symptoms - the tingling feet, funny mouth taste and the fatigue will lessen as the chemo leaves my body. Next steps is to get an ultrasound to make sure that they can see the tumor on an ultrasound because the day of surgery a wire will be placed so the doctor can know what area needs to be removed as there is little evidence of the tumor by feel.
I am relieved and happy and tired as it is well past my bedtime. I'm hoping you've all done your taxes or at least figure out if you owe anything and file for an extension. I've already gotten both my refunds deposited so both DC and the federal government were pretty quick.
Otherwise, I seem to be doing better. I stopped having fevers after Thursday but that was related to the white blood cell production and my numbers seem high. I still get tired easily, yesterday working a whole day just about exhausted me but in general I feel pretty good and like myself. My brain seems to be functioning and I'm hopeful that I can even start walking more than a couple of blocks but that might be asking a lot.
Anyway, I'm hoping residual symptoms - the tingling feet, funny mouth taste and the fatigue will lessen as the chemo leaves my body. Next steps is to get an ultrasound to make sure that they can see the tumor on an ultrasound because the day of surgery a wire will be placed so the doctor can know what area needs to be removed as there is little evidence of the tumor by feel.
I am relieved and happy and tired as it is well past my bedtime. I'm hoping you've all done your taxes or at least figure out if you owe anything and file for an extension. I've already gotten both my refunds deposited so both DC and the federal government were pretty quick.
Friday, April 10, 2009
Sleeping Through The Night
I just slept from 11:30 to 6:45 and woke up feeling good if a little amazed. It scary to wake up and wonder how it can possibly not be 2 or 4 in the morning. It also is slightly ironic as i had a coke at lunch which increased my caffeine level. I also seem to have had a 24-hour fever free period which might be causal.
Yesterday was an okay day - I had the MRI early in the morning - nothing like trying to psych yourself up while the machine is knocking and noisy and a fire alarm is ringing - and this is all before it was my turn. The MRI went smoothly though was interesting given I have been drooly and having some reflux. I was also a bit of a disaster before the test given a certain amount of spasming in my hands. I managed to spill water - twice, couldn't work the key to the locker to store my clothes and generally was a bit of a dropping fool. People were all very nice - there's something about mentioning that you just finished your 8th round of chemo that makes people really sympathetic. I will find out the results from the MRI on Tuesday and will report back. I'm hoping my positive talk to my body about how the chemo should have scooped out the tumor in a regular pattern or shrunk it evenly still worked even in the chaos which was the imaging department.
Afterward I went and had my blood drawn. Of course, accessing my veins twice in a morning couldn't possibly go smoothly. It took two tries to access a vein to get my blood work done afterward. I think the heroic vein on my left arm in the crook has been accessed too many times, but they eventually got blood from my right hand. He did seem to think about reaccessing the recently accessed vein which just seemed too creepy to go back in and work it again. I did decide that I was too exhausted and felt it would be too much to go into work with my three bandages and pin-cushion look. I did miss a TPC tax day event over who should pay taxes which is too bad as it went really well but I will listen to the podcast later on.
I called in later Thursday and did hear from my case manager that my blood counts are good - higher than normal but not freakishly so. So I'm hopeful that this weekend will be fairly non-eventful and might be able to think that chemo is officially over :).
Anyway - I should get up and go to work - which I haven't really successfully done this week. I hope you all have a great weekend and a happy Easter. (Is that the right word for the rising of one's good from the dead?) May all eggs be found and not too much chocolate eaten at one sitting.
Of course - I still have reflux and some other stomach issues but I'm guessing they will resolve and everything seems better with no fevers and a functional immune system.
Yesterday was an okay day - I had the MRI early in the morning - nothing like trying to psych yourself up while the machine is knocking and noisy and a fire alarm is ringing - and this is all before it was my turn. The MRI went smoothly though was interesting given I have been drooly and having some reflux. I was also a bit of a disaster before the test given a certain amount of spasming in my hands. I managed to spill water - twice, couldn't work the key to the locker to store my clothes and generally was a bit of a dropping fool. People were all very nice - there's something about mentioning that you just finished your 8th round of chemo that makes people really sympathetic. I will find out the results from the MRI on Tuesday and will report back. I'm hoping my positive talk to my body about how the chemo should have scooped out the tumor in a regular pattern or shrunk it evenly still worked even in the chaos which was the imaging department.
Afterward I went and had my blood drawn. Of course, accessing my veins twice in a morning couldn't possibly go smoothly. It took two tries to access a vein to get my blood work done afterward. I think the heroic vein on my left arm in the crook has been accessed too many times, but they eventually got blood from my right hand. He did seem to think about reaccessing the recently accessed vein which just seemed too creepy to go back in and work it again. I did decide that I was too exhausted and felt it would be too much to go into work with my three bandages and pin-cushion look. I did miss a TPC tax day event over who should pay taxes which is too bad as it went really well but I will listen to the podcast later on.
I called in later Thursday and did hear from my case manager that my blood counts are good - higher than normal but not freakishly so. So I'm hopeful that this weekend will be fairly non-eventful and might be able to think that chemo is officially over :).
Anyway - I should get up and go to work - which I haven't really successfully done this week. I hope you all have a great weekend and a happy Easter. (Is that the right word for the rising of one's good from the dead?) May all eggs be found and not too much chocolate eaten at one sitting.
Of course - I still have reflux and some other stomach issues but I'm guessing they will resolve and everything seems better with no fevers and a functional immune system.
Wednesday, April 8, 2009
Getting through last chemo
I am very happy that this is the last week (or two) that I will be at the mercy of side effects and symptoms from chemo. I don't know if it is the cumulation or the fact that getting the neulastra shot has put my white blood cell production into over-drive but since Sunday I have been pretty much hanging out and trying to fight symptoms with drugs.
Saturday I hung out with my friends, Peter, Jon and Tracy which was fun even if the food at Lauriol Plaza wasn't great. Peter (a friend from SF) hung out and even came with me to get my shot in the afternoon. Everything went fine and we even had a lovely drive out to the airport on random non-major roads that Britney (my gps) recommended. I drove home from the airport a more traditional way and while stuck in some cherry blossom traffic 0n 66 was happy to be out and about with fresh air coming through the window. I made it home and parked a little after 5 and then started when I got home started feeling really tired.
Sunday (steroid withdrawal day) was spent discovering the wonder which is instant NetFlix. I ended up watching 5 movies that were eclectic but it turned out to be a fantastic way to pass a fatigue filled day. Movies included National Treasure Book of Secrets (not as good as the first one), Jesus Camp (documentary about young evangelicals), Gone Baby Gone (Boston Crime drama - Ben Affleck directorial debut), 21 ( MIT blackjack players) and Penelope (Christina Ricci with a pig's nose) - I really enjoyed all of them but my standards may have been relaxed. Two featured Ed Harris, 2 featured the Boston/Cambridge area and all took my mind off of the fact that the idea of getting out of bed and doing something strenuous like peeing or eating took a fair amount of self talk. It actually wasn't a bad day and was made better thinking it was one of the last roller coaster ride days I'd have.
Monday was mellow in the morning - I'm toying with the idea of going on a 3 or 4 day retreat at a healing center for Cancer patients that includes some therapy, meditation and new-agey tools for dealing with Cancer. I started thinking about it after reading Kitchen Table Wisdom, which talked about week long group meetings in California at the Commonweal institute - while on the website I found that a sister program is literally around the corner from me. I stopped by with Peter on Saturday and then on Monday to pick up a form. The weekend would have some group therapy like sessions, some movement classes , vegetarian food, some massage and art therapy. It would definitely be different than my day to day life and I vary between thinking it would be really good for me and wondering if it will be too new-agey and drive me a little crazy. The three day event is in June and there is a 4 day event in July. I found the book valuable and feel like getting out of my comfort zone and examining different (emotional, psychological) aspects of this experience might be good for me.
Then Monday afternoon the bone pain/low fevers started and I've quickly become a fan of my oxycodone (yes this might be how addiction starts) as my bone pain is getting increasingly intense. I didn't really have bone pain from the Neulestra or chemo before the Taxotere but this time I seem to be achy a lot. Yesterday I came home early and ended up in bed from 3 on - and took a second oxycodone at 7:30 and spent most of the evening/night listening to the radio and sleeping and being up and down. Monday I had a restless night but it was more about weird dreams. Yesterday I was up and down a lot and then ended up either having reflux or being nauseated, not sure what was happening with my stomach. In the end in the course of last night I took the oxycodone, an ativan, a pepcid ac, a couple of tums, broke out the break-out nausea medicine from the first 4 rounds and used the magic mouthwash a couple of times. I'm pretty sure the drugs don't interact and i didn't take multiple pills but it was a little odd.
Today the bone aching has started by 11 - I had a conference call this morning that i went into the office for - and picked up some pre-Seder food that Susan and Eric gave to me despite my canceling on attending their Seder tonight. Somehow I think my bone aching evenings aren't conducive for group gathering. Canceling was probably wise as my body is aching already. I have now taken an Oxycodone in the daytime (I had only been taking it in the afternoon and evening) and am wondering about how high my white blood cell count will be - I'm hoping that the achiness won't correspond one-to-one to blood cell production or I might be in trouble with a really high number. I will know tomorrow when my morning will include an MRI to see how much shrinkage has occurred and then I'll get my blood work done.
Thanks to Susan and Eric I will get to enjoy some Seder foods if not the story of the Passover - she sent me some matzo, matzo ball soup and fish cakes. I'll add some spinach (closest thing to bitter herbs) and some cranberry juice and if feeling ambitious might even boil an egg and mix up some nut and fruit mixture. If foie gras could substitute for lamb I might even get close to a Seder dinner. I will spend some time individually contemplating how this night (and year) is different from all other nights.
I hope for those of you celebrating Passover you have a fabulous time with friends and family and we can all think about the value of freedom and contemplate those still suffering from war and oppression. With all the focus of the world on economic matters it was heartening to hear wealthier countries pledge to continue aid payments to more developing countries. I also hope we don't lose sight of the many countries where people are still suffering and living with uncertainty and instability. Of course depending on how many pills I end up taking tonight I might end up having fascinating conversations with Elijah.
Saturday I hung out with my friends, Peter, Jon and Tracy which was fun even if the food at Lauriol Plaza wasn't great. Peter (a friend from SF) hung out and even came with me to get my shot in the afternoon. Everything went fine and we even had a lovely drive out to the airport on random non-major roads that Britney (my gps) recommended. I drove home from the airport a more traditional way and while stuck in some cherry blossom traffic 0n 66 was happy to be out and about with fresh air coming through the window. I made it home and parked a little after 5 and then started when I got home started feeling really tired.
Sunday (steroid withdrawal day) was spent discovering the wonder which is instant NetFlix. I ended up watching 5 movies that were eclectic but it turned out to be a fantastic way to pass a fatigue filled day. Movies included National Treasure Book of Secrets (not as good as the first one), Jesus Camp (documentary about young evangelicals), Gone Baby Gone (Boston Crime drama - Ben Affleck directorial debut), 21 ( MIT blackjack players) and Penelope (Christina Ricci with a pig's nose) - I really enjoyed all of them but my standards may have been relaxed. Two featured Ed Harris, 2 featured the Boston/Cambridge area and all took my mind off of the fact that the idea of getting out of bed and doing something strenuous like peeing or eating took a fair amount of self talk. It actually wasn't a bad day and was made better thinking it was one of the last roller coaster ride days I'd have.
Monday was mellow in the morning - I'm toying with the idea of going on a 3 or 4 day retreat at a healing center for Cancer patients that includes some therapy, meditation and new-agey tools for dealing with Cancer. I started thinking about it after reading Kitchen Table Wisdom, which talked about week long group meetings in California at the Commonweal institute - while on the website I found that a sister program is literally around the corner from me. I stopped by with Peter on Saturday and then on Monday to pick up a form. The weekend would have some group therapy like sessions, some movement classes , vegetarian food, some massage and art therapy. It would definitely be different than my day to day life and I vary between thinking it would be really good for me and wondering if it will be too new-agey and drive me a little crazy. The three day event is in June and there is a 4 day event in July. I found the book valuable and feel like getting out of my comfort zone and examining different (emotional, psychological) aspects of this experience might be good for me.
Then Monday afternoon the bone pain/low fevers started and I've quickly become a fan of my oxycodone (yes this might be how addiction starts) as my bone pain is getting increasingly intense. I didn't really have bone pain from the Neulestra or chemo before the Taxotere but this time I seem to be achy a lot. Yesterday I came home early and ended up in bed from 3 on - and took a second oxycodone at 7:30 and spent most of the evening/night listening to the radio and sleeping and being up and down. Monday I had a restless night but it was more about weird dreams. Yesterday I was up and down a lot and then ended up either having reflux or being nauseated, not sure what was happening with my stomach. In the end in the course of last night I took the oxycodone, an ativan, a pepcid ac, a couple of tums, broke out the break-out nausea medicine from the first 4 rounds and used the magic mouthwash a couple of times. I'm pretty sure the drugs don't interact and i didn't take multiple pills but it was a little odd.
Today the bone aching has started by 11 - I had a conference call this morning that i went into the office for - and picked up some pre-Seder food that Susan and Eric gave to me despite my canceling on attending their Seder tonight. Somehow I think my bone aching evenings aren't conducive for group gathering. Canceling was probably wise as my body is aching already. I have now taken an Oxycodone in the daytime (I had only been taking it in the afternoon and evening) and am wondering about how high my white blood cell count will be - I'm hoping that the achiness won't correspond one-to-one to blood cell production or I might be in trouble with a really high number. I will know tomorrow when my morning will include an MRI to see how much shrinkage has occurred and then I'll get my blood work done.
Thanks to Susan and Eric I will get to enjoy some Seder foods if not the story of the Passover - she sent me some matzo, matzo ball soup and fish cakes. I'll add some spinach (closest thing to bitter herbs) and some cranberry juice and if feeling ambitious might even boil an egg and mix up some nut and fruit mixture. If foie gras could substitute for lamb I might even get close to a Seder dinner. I will spend some time individually contemplating how this night (and year) is different from all other nights.
I hope for those of you celebrating Passover you have a fabulous time with friends and family and we can all think about the value of freedom and contemplate those still suffering from war and oppression. With all the focus of the world on economic matters it was heartening to hear wealthier countries pledge to continue aid payments to more developing countries. I also hope we don't lose sight of the many countries where people are still suffering and living with uncertainty and instability. Of course depending on how many pills I end up taking tonight I might end up having fascinating conversations with Elijah.
Friday, April 3, 2009
The power of drugs
So due to my swapping pills (and having an incredibly mellow evening due to the 2 ativans at 4:30) taking the steroids at 10:30 has led to not much sleep. At 2:30 I started reading which hasn't been a bad way to pass much of the night. I'm reading Kitchen Table Wisdom by Rachel Remen which is a collection of stories based on her life and practice as a counselor to cancer and other sick patients and their doctors. She also has some chronic illness and went from pediatric oncologist to therapist. The book is written as a collection of 2-4 page stories many of which are thought provoking or soothing and has been especially helpful in the aftermath of my stay in the hospital and the fact that with the end of chemo I seem to be apprehensive and a little obsessive about next steps and the uncertainty concerning how my tumor has shrunk.
It has definitely gotten smaller - ideal is no evidence but I would be happy with shrinking in a consistent pattern rather than a swiss-cheese pattern - for the geeks among us I am looking for a small close compact set. I will accept whatever next steps are but apparently I am not great with uncertainty.
Besides starting to obsess about what is next, this has been a good week. My friend Debbie was in town over the weekend and we hung out and even went to brunch beyond the 2 block radius of my house. Sunday I went to see Duplicity with Dana and went to Target and dinner - a pretty full weekend especially compared to last weekend on Bles 2 (My G-town hospital ward).
This week was good - I felt mostly normal Monday and Tuesday and had no antibiotics or steroids or chemo in my body which was pretty great. Monday there was a roundtable and I even felt with it enough to participate and comment. Tuesday I even did my taxes which made me happy to do something normal and feel like I could do them and get them right. We'll see what the IRS says . Of course last year I did my taxes and ended up having them try to direct deposit my money into my closed Wells Fargo account and I had no chemically induced/health excuse besides general absent mindedness.
Despite the mainly sleepless night I feel pretty good - I think the Taxotere or Fred is a fine drug and I'm hopeful that taking the magic mouthwash will keep the thrush away and my immune system will be okay with the neustera shot on Saturday.
Thank you all for your support - I think Kitchen Table Wisdom is a good book even for those not having health issues - it was given to me by a friend who has experienced loss and has a great attitude towards living and working and is an inspiration. (Thank you Gene.)
I do think this experience has solidified some good characteristics I have and I'm hoping is making me more patient and accepting of things I can't always control. Trying to be more zen and taking things as they come and day by day isn't my natural state but I am doing it more almost by neccessity and might be a good attitude adjustment to keep.
I'm hoping you all had a more restful night even though I'd have to count this as a good night despite the lack of sleep.
Kim
It has definitely gotten smaller - ideal is no evidence but I would be happy with shrinking in a consistent pattern rather than a swiss-cheese pattern - for the geeks among us I am looking for a small close compact set. I will accept whatever next steps are but apparently I am not great with uncertainty.
Besides starting to obsess about what is next, this has been a good week. My friend Debbie was in town over the weekend and we hung out and even went to brunch beyond the 2 block radius of my house. Sunday I went to see Duplicity with Dana and went to Target and dinner - a pretty full weekend especially compared to last weekend on Bles 2 (My G-town hospital ward).
This week was good - I felt mostly normal Monday and Tuesday and had no antibiotics or steroids or chemo in my body which was pretty great. Monday there was a roundtable and I even felt with it enough to participate and comment. Tuesday I even did my taxes which made me happy to do something normal and feel like I could do them and get them right. We'll see what the IRS says . Of course last year I did my taxes and ended up having them try to direct deposit my money into my closed Wells Fargo account and I had no chemically induced/health excuse besides general absent mindedness.
Despite the mainly sleepless night I feel pretty good - I think the Taxotere or Fred is a fine drug and I'm hopeful that taking the magic mouthwash will keep the thrush away and my immune system will be okay with the neustera shot on Saturday.
Thank you all for your support - I think Kitchen Table Wisdom is a good book even for those not having health issues - it was given to me by a friend who has experienced loss and has a great attitude towards living and working and is an inspiration. (Thank you Gene.)
I do think this experience has solidified some good characteristics I have and I'm hoping is making me more patient and accepting of things I can't always control. Trying to be more zen and taking things as they come and day by day isn't my natural state but I am doing it more almost by neccessity and might be a good attitude adjustment to keep.
I'm hoping you all had a more restful night even though I'd have to count this as a good night despite the lack of sleep.
Kim
Thursday, April 2, 2009
Last Chemo
Chemo 8 was today and went really well. Visit with the doctor and team was mostly going over the craziness of the last treatment and hospital visit. I seem to have hit all side effects and then some - having gotten some neuropathy or tingling in my feet which seemed to have started after the hospital stay and the bad antibiotic. I did manage to shock BosoxFox when using a curse word in describing the state of my big toe-nails. It was only with the med-student but I should clean up my language. There was a fair amount of laughter in a good way as I think the chemo team can't quite believe the ups and downs I've had with the yew tree derivatives. Partly my spirits were still high - I think if I was more depressed about this they would respond differently. The indications of shrinkage are still there though my oncologist was more tempered about how that will translate into surgery. This is the big question on my mind right now.
My doctor also didn't think the trip to Paris was totally out of the question (which I was putting a lower probability on after my stay at Gtown) but I'm guessing possibly a trip closer by would make more sense.
Chemo went quickly - bosox fox came with me and went out to get lunch and missed the pre-treatment. We got to chemo lab at 12 (somewhat late for the 11:30 appt) and were out a little after 2.
I felt good enough afterward to drive home. Now I'm tired after dinner with Debbie and ready for bed. Hoping to avoid the side effects from the last couple of weeks (thrush, and getting nuetropenic) by being proactive. Taking magic mouthwash and eating yogurt and getting a neustera shot on Saturday - my white blood cells might get high and i might run some fevers but hopefully things will be okay.
Next week I'll have blood work done and an mri to see what we have accomplished. I won't know until the following tuesday when i meet with my breast surgeon so chemo will seem done after next week and then i have to think about the next steps.
Kim
P.S. I have just realized why I am tired - I grabbed the wrong container and took two ativan at 4:30 and not the steroids. So I just took the steroids and we'll see if any sleep is in my night tonight. Maybe it is a good thing I am finishing soon. Or I would need to write these things down.
My doctor also didn't think the trip to Paris was totally out of the question (which I was putting a lower probability on after my stay at Gtown) but I'm guessing possibly a trip closer by would make more sense.
Chemo went quickly - bosox fox came with me and went out to get lunch and missed the pre-treatment. We got to chemo lab at 12 (somewhat late for the 11:30 appt) and were out a little after 2.
I felt good enough afterward to drive home. Now I'm tired after dinner with Debbie and ready for bed. Hoping to avoid the side effects from the last couple of weeks (thrush, and getting nuetropenic) by being proactive. Taking magic mouthwash and eating yogurt and getting a neustera shot on Saturday - my white blood cells might get high and i might run some fevers but hopefully things will be okay.
Next week I'll have blood work done and an mri to see what we have accomplished. I won't know until the following tuesday when i meet with my breast surgeon so chemo will seem done after next week and then i have to think about the next steps.
Kim
P.S. I have just realized why I am tired - I grabbed the wrong container and took two ativan at 4:30 and not the steroids. So I just took the steroids and we'll see if any sleep is in my night tonight. Maybe it is a good thing I am finishing soon. Or I would need to write these things down.
Saturday, March 28, 2009
Mystery Solved
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.
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.
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.
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