So after a few weeks of weather in the 70's to 80's, the weather got all cold and rainy today. I suspect it is because last weekend I carefully pulled all her shorts and short sleeved shirts from the storage and brought them upstairs. Although it is only March, it really was short/skort weather for a while there.
I had planned to try to go into work again today, but the queasy feeling upon awakening combined with the drizzle discouraged me, real fast. Which turned out to be a good choice, I also was having some of that chemo related GI distress I am so not fond of. TMI, probably, so I will stop here.
I got some writing done from home and also attempted to pick up the house a bit more in anticipation of Mom's arrival this evening. The guest room is fine, but the quantities of cat hair everywhere are a bit daunting and she is a dog person, not a cat person, so I try to "de-cat" the place as much as I am able. The cats are not cooperating, it is the shedding season. I brushed Gracie for half an hour the other day and could have made a whole other cat with the hair.
Sofie is being very cute about trying to gather up toys she doesn't play with anymore so we can get rid of them. She wanted to have a yard sale, but we don't have the quantity nor the location to be successful. We will probably bring some things to her old preschool, they are having a fundraising yard sale next month, I think. So that might be best. It is another sign she is growing up and "getting it" about needing to get rid of some toys before we add more. And there is really no place to add anything, as any of the recent visitors can attest.
Actually, this summer, I am going to upgrade her room a bit, making it less little girl and more big girl. She wants her room red, which is a bit over the top, but I think I will paint the walls that are pale yellow (from her old nursery colors) and make the rest blue. And put up some shelves to hold her growing collections of snow globes and now she wants to collect bobble heads. Why? I have no idea, but her friend Abby has some and I think that is the primary motivation. She is doing more "girl bonding" these days. She still is a little girl to me, but she is more and more wanting to feel more independent and grown up. And she tells me, in no uncertain terms, when I am crossing a line: "Mom, I can do that myself" I hear it all the time now. I am having early empty nest anticipations and I don't like it!!! I still think of her as my baby.
So, we have about three hours to go until we pick up Mom, and have to finish her writing homework. So this is a good time to stop. Tomorrow is another day as Scarlett would say,
and will provide time for Mom and I to visit.
I have the heat on, when I was using the air conditioner just two days ago. So weird.
Thursday, March 29, 2007
Wednesday, March 28, 2007
Golden Light
This is just a brief posting. Today, day right after chemo day, was a great one. Pumped still on the steroids from yesterday and taking the anti-nausea meds, I felt great. Could not sleep last night until nearly 2 AM, but woke at 7 all bright eyed and ready to go.
Had a great Polarity session again today with Janice. I don't claim to understand it all, but this sort of energy work is terrific. Several weeks ago, I was teary and knew in my "gut" that the treatment (Doxil) was not working. And I was right. Today, I went in feeling just wonderful and the session was so energizing. At the end, I was visualizing a golden light coming from my heart, which to me represents the love I have both received and been blessed to give. I often see various "auras" or lights during her sessions, but this was unique and very soothing and wonderful.
Went to dinner with Tracey and Sharon at a local ninth street place with Sofie, who fussed and tantrumed and was obnoxious. Still very demanding and wanted to eat chips and queso even after her meal was served. I held my ground but she made the meal not much fun. So when we got home, I was surprised when she spontaneously apologized for her bad behaviour at the restaurant. Maybe this is a good sign that she might be getting more self aware.
Overall, I expect tomorrow to be a queasy day and I might or might not go into work, depending on the early morning experience. Mom comes tomorrow PM, and I should also spend an hour or so picking up the place to make it less messy. It can get out of hand quickly. The cleaning folks come next week, so it is up to me.
But back to the golden light. I really do feel this sense of love pouring out of me, more than ever before in my life. It is such a great feeling I don't want to lose it. It is directed to all of you who are part of the net, the net that makes me know I can feel safe in this journey, no matter what. Whether you are near or far, writing a lot or not much at all, know that your presence is welcomed by me, and embraced. With golden light from my heart.
Had a great Polarity session again today with Janice. I don't claim to understand it all, but this sort of energy work is terrific. Several weeks ago, I was teary and knew in my "gut" that the treatment (Doxil) was not working. And I was right. Today, I went in feeling just wonderful and the session was so energizing. At the end, I was visualizing a golden light coming from my heart, which to me represents the love I have both received and been blessed to give. I often see various "auras" or lights during her sessions, but this was unique and very soothing and wonderful.
Went to dinner with Tracey and Sharon at a local ninth street place with Sofie, who fussed and tantrumed and was obnoxious. Still very demanding and wanted to eat chips and queso even after her meal was served. I held my ground but she made the meal not much fun. So when we got home, I was surprised when she spontaneously apologized for her bad behaviour at the restaurant. Maybe this is a good sign that she might be getting more self aware.
Overall, I expect tomorrow to be a queasy day and I might or might not go into work, depending on the early morning experience. Mom comes tomorrow PM, and I should also spend an hour or so picking up the place to make it less messy. It can get out of hand quickly. The cleaning folks come next week, so it is up to me.
But back to the golden light. I really do feel this sense of love pouring out of me, more than ever before in my life. It is such a great feeling I don't want to lose it. It is directed to all of you who are part of the net, the net that makes me know I can feel safe in this journey, no matter what. Whether you are near or far, writing a lot or not much at all, know that your presence is welcomed by me, and embraced. With golden light from my heart.
Tuesday, March 27, 2007
Defying the Numbers
Just in case anyone was wondering, the rest of Sofie's weekend (Sunday) was not boring and was quite a lot of fun. Sunday was all about her, with RE (*religious education) class at ERUUF, followed by a "secret pal" brunch, where her very sweet pal, Diane, revealed herself. Sofie kind of was interested in that for about ten minutes, but maybe next year will be more into it.
That was followed by mommies and daughter manicure/pedicures, then shopping for shoes at REI. She got not one, but two pair of Crocs (the must have shoe for the primary school set) in red and in orange. She wears them mis-matched intentionally. Then off to lunch at Moe's (an experience unto itself, they holler "welcome to Moe's" as each person enters....), then to a big Triangle Families afternoon at Duke Park. Then after that, Sofie and I were invited to Ruby Tuesdays with Jacob, Emma and their mom and grandparents. Whew. I was exhausted, she needed a big bath and all in all, it was a great day. And I had less trouble sleeping that night.
The queasiness in the AM continues, but I have kind of negotiated with my higher power that I am willing to be nauseous and yes, even barf, if I can keep my hair this round. And I have kept the hair so far and I am adjusting, better than I thought I would, to the morning sickness. It sounds to friends who have been pregnant, very similar to what they experienced the first three months. AM barfing, manageable with the drugs, and then pretty much OK for the day. Who knew? Sofie thinks it is disgusting, but tough. I want my hair this time. It is all curly and soft and I like it.
Today, I went in for Session A of round 2 of the new chemo. The labs had been done prior to the clinic visit. My CA-125 was "level" to the previous one, a potentially good sign. It means only 7 points higher, which is really negligible. The white count was lower, but not in any kind of danger zone. Which is good, because if it were really low, I might have to stop getting pedicures. The red counts were what had my nurse, Teri, worried. The Hematacrit was 25 and the Hemoglobin in the 7.6 range. Not so good.
But I feel OK. I am tired, but not fatigued, there is some sort of difference, at least to me. And my mood is great. Maybe it is the pills I am taking for mood, but I think it is just Spring, sunshine, life and happiness. Last year, when my numbers were not even this low, I could barely make it past 8:45 PM and had to sleep. These days, with the warmer weather and lovely spring days and early evenings, I find myself going and going longer. I still "hit the wall" pretty much every afternoon at 4, but if I rest for an hour or hour and half, I can make it until pretty much 11 PM. If you count watching the L-Word as an activity, that is. Which I do, because watching Jenny Shecter's character takes a lot of energy, since I want to jump up and slap that girl upside the head! L-Word for me is as close as I come to watching a soap opera. It is so surreal and so unlike any aspect of my life (unless you count the season where Dana died, but even that was 110% drama-queen drama). And where do they get the money for those clothes???? The only lesbian I know in LA is nothing like them either.
So what I kept hearing today was "you look good, but you should be more....pale, tired, etc" The numbers don't always know the whole story, I guess.
Funny. I wonder if I am simply acclimating to lower blood counts and learning to live with the new normal? Is that it? Or what?
It reminded me of when I was a college freshman. I went for my first meeting with my advisor, and he looked at my SAT scores, OK, but nothing special. Then at my college grades. The comment? "You aren't supposed to be doing this well". Is that the appropriate thing to tell a first semester freshman? I think not. And was I supposed to work less or do less well? Huh? I showed him.
Anyway, I went to work on Monday, for five hours, including a stimulating meeting of the hiring committee I am now on. I did pretty OK. I then went to two evening appointments, ending with the pre-chemo acupuncture treatment. I really think that my acupuncture doctor, Fang, is gifted. We have worked together to figure out the best timing for treatment (the day before or early the day of) and I always leave there feeling better.
And, for all of you worriers out there, who really, *really* thought I should be seeing a therapist, voila! I am. Jamie's therapist referred her to me, and I was so happy to click with her right away. I like shopping, but not for therapists. She is a Jewish woman, mother, not a lesbian but completely and genuinely comfortable with lesbians in her office, and it immediately felt "right". We have only met twice so far, but I think she will be great to have an established relationship with as I move forward in this journey. And, best of all possible worlds, she is on "the list" for my insurance, meaning my co-pay is just $40. Therapy at 1977 prices in 2007. Whoooopppeeee.!
Speaking of things long ago, this Sunday, Robin Tyler, who produced many years of West Coast and Southern Music festivals, will be performing at the Unity Conference at UNC in Chapel Hill. She called me to see if we could have dinner. We have not really spoken or written for over ten years, possibly more, I cannot keep track. I am so pleased we will be able to get together, both of us older and presumably wiser, for dinner after her show. Again, defying the number of years of not speaking, some misunderstandings, all not very important in the big picture.
In a few days, Mom arrives for a week, then it will be Spring break and Nancy and Rosalie Frank are arriving for another week. So if I am tired, there will be a good reason. I am excited about both visits and we are planning something special for our girls. Rosie is 12.5 so six years older than Sofie. Sofie loves being with her, and they both love things like swimming and skating, so it should be fun.
Last comment about defying numbers (for this blog, at least). Our friend Kimberly was at the park on Friday (yet another kid-centric activity) and somehow we got to talking about age....someone had asked me if I was Sofie's grandma. I am more or less used to this happening now, and don't get defensive anymore like I did three years ago. With no hair coloring, it is likely to happen more and more. Kimberly is mid- thirties, if that, and so when she asked my age, and I told her, she was shocked. She thought I was in my forties. And these days, I am feeling much more "forty and fabulous" than fifty and fatigued. So there.
That was followed by mommies and daughter manicure/pedicures, then shopping for shoes at REI. She got not one, but two pair of Crocs (the must have shoe for the primary school set) in red and in orange. She wears them mis-matched intentionally. Then off to lunch at Moe's (an experience unto itself, they holler "welcome to Moe's" as each person enters....), then to a big Triangle Families afternoon at Duke Park. Then after that, Sofie and I were invited to Ruby Tuesdays with Jacob, Emma and their mom and grandparents. Whew. I was exhausted, she needed a big bath and all in all, it was a great day. And I had less trouble sleeping that night.
The queasiness in the AM continues, but I have kind of negotiated with my higher power that I am willing to be nauseous and yes, even barf, if I can keep my hair this round. And I have kept the hair so far and I am adjusting, better than I thought I would, to the morning sickness. It sounds to friends who have been pregnant, very similar to what they experienced the first three months. AM barfing, manageable with the drugs, and then pretty much OK for the day. Who knew? Sofie thinks it is disgusting, but tough. I want my hair this time. It is all curly and soft and I like it.
Today, I went in for Session A of round 2 of the new chemo. The labs had been done prior to the clinic visit. My CA-125 was "level" to the previous one, a potentially good sign. It means only 7 points higher, which is really negligible. The white count was lower, but not in any kind of danger zone. Which is good, because if it were really low, I might have to stop getting pedicures. The red counts were what had my nurse, Teri, worried. The Hematacrit was 25 and the Hemoglobin in the 7.6 range. Not so good.
But I feel OK. I am tired, but not fatigued, there is some sort of difference, at least to me. And my mood is great. Maybe it is the pills I am taking for mood, but I think it is just Spring, sunshine, life and happiness. Last year, when my numbers were not even this low, I could barely make it past 8:45 PM and had to sleep. These days, with the warmer weather and lovely spring days and early evenings, I find myself going and going longer. I still "hit the wall" pretty much every afternoon at 4, but if I rest for an hour or hour and half, I can make it until pretty much 11 PM. If you count watching the L-Word as an activity, that is. Which I do, because watching Jenny Shecter's character takes a lot of energy, since I want to jump up and slap that girl upside the head! L-Word for me is as close as I come to watching a soap opera. It is so surreal and so unlike any aspect of my life (unless you count the season where Dana died, but even that was 110% drama-queen drama). And where do they get the money for those clothes???? The only lesbian I know in LA is nothing like them either.
So what I kept hearing today was "you look good, but you should be more....pale, tired, etc" The numbers don't always know the whole story, I guess.
Funny. I wonder if I am simply acclimating to lower blood counts and learning to live with the new normal? Is that it? Or what?
It reminded me of when I was a college freshman. I went for my first meeting with my advisor, and he looked at my SAT scores, OK, but nothing special. Then at my college grades. The comment? "You aren't supposed to be doing this well". Is that the appropriate thing to tell a first semester freshman? I think not. And was I supposed to work less or do less well? Huh? I showed him.
Anyway, I went to work on Monday, for five hours, including a stimulating meeting of the hiring committee I am now on. I did pretty OK. I then went to two evening appointments, ending with the pre-chemo acupuncture treatment. I really think that my acupuncture doctor, Fang, is gifted. We have worked together to figure out the best timing for treatment (the day before or early the day of) and I always leave there feeling better.
And, for all of you worriers out there, who really, *really* thought I should be seeing a therapist, voila! I am. Jamie's therapist referred her to me, and I was so happy to click with her right away. I like shopping, but not for therapists. She is a Jewish woman, mother, not a lesbian but completely and genuinely comfortable with lesbians in her office, and it immediately felt "right". We have only met twice so far, but I think she will be great to have an established relationship with as I move forward in this journey. And, best of all possible worlds, she is on "the list" for my insurance, meaning my co-pay is just $40. Therapy at 1977 prices in 2007. Whoooopppeeee.!
Speaking of things long ago, this Sunday, Robin Tyler, who produced many years of West Coast and Southern Music festivals, will be performing at the Unity Conference at UNC in Chapel Hill. She called me to see if we could have dinner. We have not really spoken or written for over ten years, possibly more, I cannot keep track. I am so pleased we will be able to get together, both of us older and presumably wiser, for dinner after her show. Again, defying the number of years of not speaking, some misunderstandings, all not very important in the big picture.
In a few days, Mom arrives for a week, then it will be Spring break and Nancy and Rosalie Frank are arriving for another week. So if I am tired, there will be a good reason. I am excited about both visits and we are planning something special for our girls. Rosie is 12.5 so six years older than Sofie. Sofie loves being with her, and they both love things like swimming and skating, so it should be fun.
Last comment about defying numbers (for this blog, at least). Our friend Kimberly was at the park on Friday (yet another kid-centric activity) and somehow we got to talking about age....someone had asked me if I was Sofie's grandma. I am more or less used to this happening now, and don't get defensive anymore like I did three years ago. With no hair coloring, it is likely to happen more and more. Kimberly is mid- thirties, if that, and so when she asked my age, and I told her, she was shocked. She thought I was in my forties. And these days, I am feeling much more "forty and fabulous" than fifty and fatigued. So there.
Saturday, March 24, 2007
What a Boring Not Fun Day
Not my idea, the title is from something Ms. Sofie said late this evening. "I hardly had any fun today at all" she complained at dinner.
OK, you be the decider:
From 7:30 AM until about 11:30 she played with Avery (an almost five year honey of a boy who did a sleep over). First, they played in her room, then they watch Disney cartoons for short while, then Sofie made pancakes (she is getting really good at flipping them), then they got dressed and went out to the trampoline where they played and jumped for over 1.5 hours....then they were joined briefly by Avery's 7 year old sister Olivia, who came with Dad Matt to pick Avery up. Did I mention Avery was a sweetheart? It made me kind of miss the little brother I always intended for her to have that she is no way having now. Funny digression...the kids were up until nearly ten PM giggling and playing in Sofie's room, then finally slept. About 4 AM, Avery came into my room. He had gone to the bathroom and he said "but now I cannot go back to sleep in Sofie's room". So he slept with me. I went into Sofie's room after he fell back to sleep and I had to stifle a laugh...he literally could not sleep there in the bottom double bed because Ms. Sofia had tossed herself diagonally across the bed, leaving no room for the poor boy!
After the bouncing and pancakes, Sofie went to her ice skating lesson (a half hour) and then did free skate for nearly another half hour. After this, we joined friends in a local sports bar (nicer than that sounds) and had a late lunch and watched the Duke girls play Rutgers in what must be one of their worst games ever. It was so painful to watch that loss, especially at the end when Harding missed two shots. It had to be even more painful for her, but she did not lose that game, it was a team effort. Bales did her best, but she could not save that game. Very sad.
After the excitement of the game, and a huge brownie and ice cream dessert to keep Sofie quiet the last 30 minutes or so, we went home where I collapsed, Jamie went on a mercy mission for me to Costco (I have to bring bagels tomorrow to a brunch) and Sofie watched one of her favorite Scooby Doo movies. I told her to wake me when it was over, which turned out to be 6:40 PM!
I quickly made her a bath, where she played happily until it was hair washing time, then we had a late supper (Jamie cooked!) and she then played a bit more until she was urged to brush teeth and get into bed for stories. Three books later, Jamie finally emerged from the room.
So, as you can see, a very boring, not fun day. What on earth about tomorrow? We don't have plans for the circus or anything "really fun" other than a Triangle Families play date at Duke Park, so I guess it will be another day of tedium for the girl. Not for me, I am going as fast as I can! And I am getting ready for another round of chemo next week.
Overall, this past week, the nausea and vomiting abated, the neuropathy in my right foot is very minimal and I am not (knock wood) yet losing hair. I call that a good week, myself. And hardly boring.
OK, you be the decider:
From 7:30 AM until about 11:30 she played with Avery (an almost five year honey of a boy who did a sleep over). First, they played in her room, then they watch Disney cartoons for short while, then Sofie made pancakes (she is getting really good at flipping them), then they got dressed and went out to the trampoline where they played and jumped for over 1.5 hours....then they were joined briefly by Avery's 7 year old sister Olivia, who came with Dad Matt to pick Avery up. Did I mention Avery was a sweetheart? It made me kind of miss the little brother I always intended for her to have that she is no way having now. Funny digression...the kids were up until nearly ten PM giggling and playing in Sofie's room, then finally slept. About 4 AM, Avery came into my room. He had gone to the bathroom and he said "but now I cannot go back to sleep in Sofie's room". So he slept with me. I went into Sofie's room after he fell back to sleep and I had to stifle a laugh...he literally could not sleep there in the bottom double bed because Ms. Sofia had tossed herself diagonally across the bed, leaving no room for the poor boy!
After the bouncing and pancakes, Sofie went to her ice skating lesson (a half hour) and then did free skate for nearly another half hour. After this, we joined friends in a local sports bar (nicer than that sounds) and had a late lunch and watched the Duke girls play Rutgers in what must be one of their worst games ever. It was so painful to watch that loss, especially at the end when Harding missed two shots. It had to be even more painful for her, but she did not lose that game, it was a team effort. Bales did her best, but she could not save that game. Very sad.
After the excitement of the game, and a huge brownie and ice cream dessert to keep Sofie quiet the last 30 minutes or so, we went home where I collapsed, Jamie went on a mercy mission for me to Costco (I have to bring bagels tomorrow to a brunch) and Sofie watched one of her favorite Scooby Doo movies. I told her to wake me when it was over, which turned out to be 6:40 PM!
I quickly made her a bath, where she played happily until it was hair washing time, then we had a late supper (Jamie cooked!) and she then played a bit more until she was urged to brush teeth and get into bed for stories. Three books later, Jamie finally emerged from the room.
So, as you can see, a very boring, not fun day. What on earth about tomorrow? We don't have plans for the circus or anything "really fun" other than a Triangle Families play date at Duke Park, so I guess it will be another day of tedium for the girl. Not for me, I am going as fast as I can! And I am getting ready for another round of chemo next week.
Overall, this past week, the nausea and vomiting abated, the neuropathy in my right foot is very minimal and I am not (knock wood) yet losing hair. I call that a good week, myself. And hardly boring.
Thursday, March 22, 2007
A (Perfect) Ordinary Day
I try to keep my mind open about the positive things about having this cancer recurrence. One recent nice surprise is that most of the pants that did not fit me last spring now do, and I have been delighting in trying them on and realizing that they fit (some are even loose). Finally, the cancer weight-loss diet plan is working. Last year, it was all I could do to not gain weight during the treatments.
Another wonderful thing about being home is that I sometimes get to experience what life might be like if I were one of those moms who did not have to work full time. That includes being able to have lunch with Sofie at her school during the week for no special reason! The school encourages parents to join their children for lunch during the week, but I have rarely been able to do this, seeing as my work is in Chapel Hill and her lunch time is 11:15 in the morning (way too early for me, but they burn off a lot of energy just being kids).
So this past Tuesday, on what was a perfectly beautiful spring day (warm, but not hot, and sunny with all sorts of spring allergens blooming madly), I told Sofie I would meet her for lunch. I asked her what kind of lunch she would like. She did not hesitate: "Sushi, and hot tea!!". So there you have it, my daughter is making me so proud.
I stopped at Whole Foods before lunch and got the sushi (more of a mixed platter, with her getting the maguro and salmon rolls) and also got edamame. I brought a mug of hot tea as well.
I set it all up in the cafeteria so that when her class arrived (she appeared to be the line leader that day), she lit up with delight! We sat and had sort of a sushi picnic. Many of the kids seemed fascinated by her food, most had never tasted sushi ever. Or the edamame. There was plenty of that to share, so Sofie passed it around. The kids loved shelling it and tasting it. One kid was planning to plant hers (I did not want to burst her bubble and let her know that cooked edamame was unlikely to sprout). I felt like I had brought a small cultural expansion to the class that day. Sofie was so proud I was there, and ate well, something that she is doing a lot more of these days. Although her manners still need a lot of work, she is eating more food, another growth spurt must be in the offing.
After lunch, I went home, since I had not slept well the night before. I crashed for a few hours and that felt lovely. Then Jamie came to get Boone to take him to the vet for his check up. I kind of lazed about the rest of the afternoon, what a slug. But I tend to follow my body's lead these days and it was tired.
The days are more likely to be in the 60's and 70's, even up to 80 this week and the upcoming weeks. I headed to work yesterday and spent five hours there, in two short meetings, and then clearing out literally 1000 emails. I had 1871 in the in box when I arrived (I have read a bunch online from home, but you cannot clear them out or file them as well as I could at the office).
My mom arrives mid-week next week, just after treatment cycle two starts. She will be here for one of the treatments and for the Friday preceeding Spring break when Sofie is off from school. Not quite sure what we will do that day, hopefully something we can do outside, a picnic or something.
I am torn about going back to the office more. I was totally exhausted yesterday evening from only five hours of not all that much activity (but lots of chat and computer stuff). But I need to get my head wrapped around going back at least part time. I miss people, there is stuff to do and my boss Carol has been more than patient. Assuming I can get a good handle on the rashing and the nausea, I can manage those things and go back at least part time.
Which in the long run might be good for them, for me and in general.
But it is hard to tear myself away from my home in this part of the year, I am content many days to be slow, read, watch Ellen and/or Rosie (aka The View) or Oprah and just be glad to be alive.
Yesterday, to make a lovely ending to a nice day, I had a pot of beautful tulips waiting for me at my door. The card was simple "With love from your Academy of Friends Family". That is what a lot of this has been for me, accepting with joy and grace, the love from all sorts of parts of my extended family.
PS: I recommend that everyone click on the link to Jamie's blog and read about Sofie and her newly discovered love of basketball. Go Duke! Go Carolina! Go NC State!
Another wonderful thing about being home is that I sometimes get to experience what life might be like if I were one of those moms who did not have to work full time. That includes being able to have lunch with Sofie at her school during the week for no special reason! The school encourages parents to join their children for lunch during the week, but I have rarely been able to do this, seeing as my work is in Chapel Hill and her lunch time is 11:15 in the morning (way too early for me, but they burn off a lot of energy just being kids).
So this past Tuesday, on what was a perfectly beautiful spring day (warm, but not hot, and sunny with all sorts of spring allergens blooming madly), I told Sofie I would meet her for lunch. I asked her what kind of lunch she would like. She did not hesitate: "Sushi, and hot tea!!". So there you have it, my daughter is making me so proud.
I stopped at Whole Foods before lunch and got the sushi (more of a mixed platter, with her getting the maguro and salmon rolls) and also got edamame. I brought a mug of hot tea as well.
I set it all up in the cafeteria so that when her class arrived (she appeared to be the line leader that day), she lit up with delight! We sat and had sort of a sushi picnic. Many of the kids seemed fascinated by her food, most had never tasted sushi ever. Or the edamame. There was plenty of that to share, so Sofie passed it around. The kids loved shelling it and tasting it. One kid was planning to plant hers (I did not want to burst her bubble and let her know that cooked edamame was unlikely to sprout). I felt like I had brought a small cultural expansion to the class that day. Sofie was so proud I was there, and ate well, something that she is doing a lot more of these days. Although her manners still need a lot of work, she is eating more food, another growth spurt must be in the offing.
After lunch, I went home, since I had not slept well the night before. I crashed for a few hours and that felt lovely. Then Jamie came to get Boone to take him to the vet for his check up. I kind of lazed about the rest of the afternoon, what a slug. But I tend to follow my body's lead these days and it was tired.
The days are more likely to be in the 60's and 70's, even up to 80 this week and the upcoming weeks. I headed to work yesterday and spent five hours there, in two short meetings, and then clearing out literally 1000 emails. I had 1871 in the in box when I arrived (I have read a bunch online from home, but you cannot clear them out or file them as well as I could at the office).
My mom arrives mid-week next week, just after treatment cycle two starts. She will be here for one of the treatments and for the Friday preceeding Spring break when Sofie is off from school. Not quite sure what we will do that day, hopefully something we can do outside, a picnic or something.
I am torn about going back to the office more. I was totally exhausted yesterday evening from only five hours of not all that much activity (but lots of chat and computer stuff). But I need to get my head wrapped around going back at least part time. I miss people, there is stuff to do and my boss Carol has been more than patient. Assuming I can get a good handle on the rashing and the nausea, I can manage those things and go back at least part time.
Which in the long run might be good for them, for me and in general.
But it is hard to tear myself away from my home in this part of the year, I am content many days to be slow, read, watch Ellen and/or Rosie (aka The View) or Oprah and just be glad to be alive.
Yesterday, to make a lovely ending to a nice day, I had a pot of beautful tulips waiting for me at my door. The card was simple "With love from your Academy of Friends Family". That is what a lot of this has been for me, accepting with joy and grace, the love from all sorts of parts of my extended family.
PS: I recommend that everyone click on the link to Jamie's blog and read about Sofie and her newly discovered love of basketball. Go Duke! Go Carolina! Go NC State!
Friday, March 16, 2007
It Was a Dark and Rainy Night
How did it get to be Friday already? Time flies when you have chemo two weeks in a row and lots of drugs to balance out to keep rashes at bay and also try to avoid nausea and get some sleep!
Jamie wasn't feeling all that great today either, but she had promised Sofie that tonight she could stay at the condo. Sofie has been asking a lot to do that, she is over staying here "all the time" and wants access to her video games and just the change from me. So Jamie, feeling a bit queasy today, got her from school and is taking her to her house for the evening. We will pick up again for ice skating lessons mid-day tomorrow, going to the Sportsplex for that.
I haven't set up any play dates for tomorrow, bummer....I should try. It helps her energy and also helps me, to have daytime resting periods as needed and time to actually "do" stuff, albeit not anything monumental.
This second treatment went pretty well, as far as I can tell. Nothing big, just occasional surprise nausea and vomiting moments (as in this AM, prior to breakfast). Not even real vomiting, just kind of a heaving and a bit of nasty stuff coming up. And then it is over.
I am still on steroids and they seem to be keeping the rash controlled....unfortunately, they also keep me up at night until 1 AM sometimes, despite meditation, trying to go into trance (self hypnosis) and all sorts of relaxing efforts. Even putting on Law and Order: SVU which usually lulls me right to sleep, did not work the past two nights. So I woke up today, still tired, and of course, the dark rainy day did not help.
I am missing my girlfriends, a lot. It was fun to have Brenda and Pam here and I miss just the chat and the hanging out with them. I am doing pretty well this week and hope to do even better next week, perhaps even venturing back to the office for a few hours mid-week. But the companionship was great. I am just feeling a bit blue today, overall, due to the change in the weather from the great sunny in the low 80's we had all week to this under 50 wetness. I was about to get the winter jackets "winterized" to put them in storage. I guess I can hold off a bit more, perhaps a week or two. But by April they seem too dark and woolly for this climate.
Durham in Spring is so delightful. I wish that weather would last for months, into the summer when it gets disgustingly hot and humid! The evenings are warm and not humid, and the days are just delicious.
On Wednesday this week, after my last class in the self-hypnosis techniques (offered free or by donation to cancer patients), I knew I still had the babysitter for one more hour, so I went to Whole Foods with one of the lovely gift cards my wonderful supporters made possible and I indulged in a full tray of sushi. It is not quite the same as going "out for sushi" to a restaurant, but they do a great job. I just sat there, slowly eating and enjoying the peace and quiet and not having to share it with Sofie! I am so thrilled she is eating and liking sushi (tuna and salmon rolls, mostly) but it is nice, now and again, to just enjoy it myself. I was a good mom and saved all the salmon sushi rolls. I packed them in her lunchbox the next day, along with a little packet of soy (the reason, I believe, that she likes it so much, she loves the soy sauce!). How very "Breakfast Club" of me, sending my 6.5 year old to school with a container of sushi. But she was thrilled.
Mostly I am writing just to say that I made it through cycle one of this new treatment pretty well. Next week is the "off week" and that is great, I only have to go in for labs. And I have a massage which I am sooooo looking forward to.
Then, lather, rinse, repeat, for an anticipated five more times, assuming this magic combination of drugs does the trick.
I am hoping very much that my hair stays put. It might thin or fall out again, I hope not. I want to just be "with hair" for now, I am so liking it.
So hang in there with me, all of you, and more will be reported soon. For now, my big plan for tonight is to run a hot bath for the first time this year and light a few candles and just soak until I prune up. That is a simple thing, but something I have missed. The idea of it is pure luxury.
Jamie wasn't feeling all that great today either, but she had promised Sofie that tonight she could stay at the condo. Sofie has been asking a lot to do that, she is over staying here "all the time" and wants access to her video games and just the change from me. So Jamie, feeling a bit queasy today, got her from school and is taking her to her house for the evening. We will pick up again for ice skating lessons mid-day tomorrow, going to the Sportsplex for that.
I haven't set up any play dates for tomorrow, bummer....I should try. It helps her energy and also helps me, to have daytime resting periods as needed and time to actually "do" stuff, albeit not anything monumental.
This second treatment went pretty well, as far as I can tell. Nothing big, just occasional surprise nausea and vomiting moments (as in this AM, prior to breakfast). Not even real vomiting, just kind of a heaving and a bit of nasty stuff coming up. And then it is over.
I am still on steroids and they seem to be keeping the rash controlled....unfortunately, they also keep me up at night until 1 AM sometimes, despite meditation, trying to go into trance (self hypnosis) and all sorts of relaxing efforts. Even putting on Law and Order: SVU which usually lulls me right to sleep, did not work the past two nights. So I woke up today, still tired, and of course, the dark rainy day did not help.
I am missing my girlfriends, a lot. It was fun to have Brenda and Pam here and I miss just the chat and the hanging out with them. I am doing pretty well this week and hope to do even better next week, perhaps even venturing back to the office for a few hours mid-week. But the companionship was great. I am just feeling a bit blue today, overall, due to the change in the weather from the great sunny in the low 80's we had all week to this under 50 wetness. I was about to get the winter jackets "winterized" to put them in storage. I guess I can hold off a bit more, perhaps a week or two. But by April they seem too dark and woolly for this climate.
Durham in Spring is so delightful. I wish that weather would last for months, into the summer when it gets disgustingly hot and humid! The evenings are warm and not humid, and the days are just delicious.
On Wednesday this week, after my last class in the self-hypnosis techniques (offered free or by donation to cancer patients), I knew I still had the babysitter for one more hour, so I went to Whole Foods with one of the lovely gift cards my wonderful supporters made possible and I indulged in a full tray of sushi. It is not quite the same as going "out for sushi" to a restaurant, but they do a great job. I just sat there, slowly eating and enjoying the peace and quiet and not having to share it with Sofie! I am so thrilled she is eating and liking sushi (tuna and salmon rolls, mostly) but it is nice, now and again, to just enjoy it myself. I was a good mom and saved all the salmon sushi rolls. I packed them in her lunchbox the next day, along with a little packet of soy (the reason, I believe, that she likes it so much, she loves the soy sauce!). How very "Breakfast Club" of me, sending my 6.5 year old to school with a container of sushi. But she was thrilled.
Mostly I am writing just to say that I made it through cycle one of this new treatment pretty well. Next week is the "off week" and that is great, I only have to go in for labs. And I have a massage which I am sooooo looking forward to.
Then, lather, rinse, repeat, for an anticipated five more times, assuming this magic combination of drugs does the trick.
I am hoping very much that my hair stays put. It might thin or fall out again, I hope not. I want to just be "with hair" for now, I am so liking it.
So hang in there with me, all of you, and more will be reported soon. For now, my big plan for tonight is to run a hot bath for the first time this year and light a few candles and just soak until I prune up. That is a simple thing, but something I have missed. The idea of it is pure luxury.
Monday, March 12, 2007
The steroidal effect
It has been about a week since I started the *new* chemo plan. The other one, Doxil, as you might recall, had a lot of "don't do this" things attached to it, to prevent really nasty side effects. One of those was no hot showers. As soon as I was sure I was off that medication, I celebrated with what might be a personal best for hot steamy showering for me. I hope Mother Earth (and Al Gore) will forgive me that one transgression, but it had been nearly two months of tepid water.
So a week has passed, made absolutely delightful with the visits from Pam Herlich and Brenda Laribee. Pam arrived a few days before B and we kinda just hung out, nothing crazy, but I always enjoy her company. B arrived late Monday night (let's just say I won't be considering US Airways for my airline carrier anytime soon) and the week went by in a flash. They accompanied me to Duke on Tuesday for chemo. That was an experience in itself, as the chemo appointment was to be at 11:30 and I did not get in until 3 PM. Even for Duke, that was a long wait!
But it went well and the day after chemo, I was still pumped up on the steroids, so we put that energy to good use and did a girls day out. We went to the Mall, shopped and visited and then had a lovely late lunch with (drum roll, please) cocktails! How very decadent, at least for me.
I had an Absolute Limon but with raspberry stuff in it, it has now become my new favorite spring/summer drink. We re-named it the "Kentini" and I hope you will all get the opportunity to try it in the future. Maybe because I indulge so rarely, but it knocked my socks off.
The rest of the week was a blur of comings and goings, Pam left early on Thursday. Which was my worst post chemo day. They had mentioned that one possible side effect was a rash. Oh, yeah, and it was (is) a doozy. All the way up my legs and very itchy!!! I tried in vain to not scratch, to treat it with just Benadryl, but I broke down and late on Friday I called, begging for something else. The something else, unfortunately, is steroids. So starting Saturday, I have six days worth. And I guess since this drug happens again tomorrow, I might be getting more.
There is a good news/bad news thing about steroids. I feel like I have energy to burn (B and I spent Sunday afternoon cleaning out the fridge and freezer and doing a full inventory of what the heck was in there). But I cannot fall asleep at night until very late (like after 1 AM) and that is not good. Plus I feel "edgy" and my heart is pounding too much for my taste. But the itching is more or less taken care of. So I guess I will have to deal with this, one rash at a time.
But why on earth would anyone take this crap intentionally? Who wants to feel that pumped up all the time? (baseball players, I guess). I just don't get it. But I have never been a druggy type. I see a weird irony with all the meds I take now.
Having Brenda here (and Pam) turned out quite differently, since I did not have to be that cautious about heat and friction anymore. But it was great. I do crash at least once a day, usually by 4 PM, and need more rest than I could ever get soloing. Plus having company during this journey is great. Brenda is so organized my refrigerator now is completely cleared of any extraneous stuff, including the year old package *unopened, and not even moldy* of tortillas and the container of mustard I had saved since some party about 8 months back.
If she were here another week, imagine what we could do to clean up my disaster area of an office. But alas, I am on my own, so I had better kick some butt this week and next. Putting that steroidal effect to good use.
Tomorrow's chemo will have the "other" drug, Carboplatin, one of the two I had last year. I think it was the one that caused the neuropathy, so I have already set myself up for more acupuncture appointments and that should help. Hopefully it won't cause quite as much joint pain as last year, that was miserable too.
So the next few months will once again be a journey, albeit one with a steroid side effect (so maybe I *will* be able to finally clear out that office and toss the old stuff). I hope and pray that this combination of drugs will be the one that does the trick. The arsenal of drugs is vast, but I don't really care to run through all of them.
My friends and colleagues at the Health Sciences Library sent a gift basket and bag last week, one of the things that they put inside was a handmade book of pictures and quotations and messages. I read it cover to cover and was amazed at the power, the capacity to care and the love that poured out of that book. I plan to read it at least a bit every day, to help to remind me that there is abundant hope out there and that I am surrounded everywhere I turn by people who care.
That must be the lesson to learn at this juncture of my life.
PS: If you have not already done so, read Jamie's blog on the last clinic visit for a funny take on how they (the doctors) see us. You can click to it from the left side of my blog (link).
So a week has passed, made absolutely delightful with the visits from Pam Herlich and Brenda Laribee. Pam arrived a few days before B and we kinda just hung out, nothing crazy, but I always enjoy her company. B arrived late Monday night (let's just say I won't be considering US Airways for my airline carrier anytime soon) and the week went by in a flash. They accompanied me to Duke on Tuesday for chemo. That was an experience in itself, as the chemo appointment was to be at 11:30 and I did not get in until 3 PM. Even for Duke, that was a long wait!
But it went well and the day after chemo, I was still pumped up on the steroids, so we put that energy to good use and did a girls day out. We went to the Mall, shopped and visited and then had a lovely late lunch with (drum roll, please) cocktails! How very decadent, at least for me.
I had an Absolute Limon but with raspberry stuff in it, it has now become my new favorite spring/summer drink. We re-named it the "Kentini" and I hope you will all get the opportunity to try it in the future. Maybe because I indulge so rarely, but it knocked my socks off.
The rest of the week was a blur of comings and goings, Pam left early on Thursday. Which was my worst post chemo day. They had mentioned that one possible side effect was a rash. Oh, yeah, and it was (is) a doozy. All the way up my legs and very itchy!!! I tried in vain to not scratch, to treat it with just Benadryl, but I broke down and late on Friday I called, begging for something else. The something else, unfortunately, is steroids. So starting Saturday, I have six days worth. And I guess since this drug happens again tomorrow, I might be getting more.
There is a good news/bad news thing about steroids. I feel like I have energy to burn (B and I spent Sunday afternoon cleaning out the fridge and freezer and doing a full inventory of what the heck was in there). But I cannot fall asleep at night until very late (like after 1 AM) and that is not good. Plus I feel "edgy" and my heart is pounding too much for my taste. But the itching is more or less taken care of. So I guess I will have to deal with this, one rash at a time.
But why on earth would anyone take this crap intentionally? Who wants to feel that pumped up all the time? (baseball players, I guess). I just don't get it. But I have never been a druggy type. I see a weird irony with all the meds I take now.
Having Brenda here (and Pam) turned out quite differently, since I did not have to be that cautious about heat and friction anymore. But it was great. I do crash at least once a day, usually by 4 PM, and need more rest than I could ever get soloing. Plus having company during this journey is great. Brenda is so organized my refrigerator now is completely cleared of any extraneous stuff, including the year old package *unopened, and not even moldy* of tortillas and the container of mustard I had saved since some party about 8 months back.
If she were here another week, imagine what we could do to clean up my disaster area of an office. But alas, I am on my own, so I had better kick some butt this week and next. Putting that steroidal effect to good use.
Tomorrow's chemo will have the "other" drug, Carboplatin, one of the two I had last year. I think it was the one that caused the neuropathy, so I have already set myself up for more acupuncture appointments and that should help. Hopefully it won't cause quite as much joint pain as last year, that was miserable too.
So the next few months will once again be a journey, albeit one with a steroid side effect (so maybe I *will* be able to finally clear out that office and toss the old stuff). I hope and pray that this combination of drugs will be the one that does the trick. The arsenal of drugs is vast, but I don't really care to run through all of them.
My friends and colleagues at the Health Sciences Library sent a gift basket and bag last week, one of the things that they put inside was a handmade book of pictures and quotations and messages. I read it cover to cover and was amazed at the power, the capacity to care and the love that poured out of that book. I plan to read it at least a bit every day, to help to remind me that there is abundant hope out there and that I am surrounded everywhere I turn by people who care.
That must be the lesson to learn at this juncture of my life.
PS: If you have not already done so, read Jamie's blog on the last clinic visit for a funny take on how they (the doctors) see us. You can click to it from the left side of my blog (link).
Tuesday, March 06, 2007
Ch ch changes
The blood tests from the ER included a CA 125, the infamous cancer marker. It went up, not up a lot, but up not down. The handwriting was on the wall and I knew that the chemo was going to change again.
Today I went for the scheduled clinic visit. The medications have changed (so I celebrated in advance with a hot shower, after two months of tepid), and since the new drugs don't have those hand/foot or other weird side effects that is a plus. The downside is the new schedule:
Two weeks on, one with one drug, the second week with the combination of two drugs, one I had last year that causes some of the neuropathy and other nausea and bad side effects.....then a week "off" and begin again. For six cycles, they say. I guess unless this one doesn't bring those damn numbers down either.
But what are you going to do? The alternative is not pretty and so visitors Pam and Brenda (and Jamie, but she left before the dripping started) went to the treatment area and after only four hours from the scheduled time of 11 AM, I got into the treatment chair and started the new process. Everything went fine, I am on steroids and anti-nausea drugs this PM so we all ate heartily for dinner, take out Chinese food and now will soon retire.
More later but this is just is just to let you all know that I am still in there, trying to figure out how to beat this cancer into submission. It doesn't always appear like my team is winning, but I am not going down without a fight. Seriously!
Good night, don't worry and yes, still keep me in your thoughts and prayers. Especially on Tuesdays!
Today I went for the scheduled clinic visit. The medications have changed (so I celebrated in advance with a hot shower, after two months of tepid), and since the new drugs don't have those hand/foot or other weird side effects that is a plus. The downside is the new schedule:
Two weeks on, one with one drug, the second week with the combination of two drugs, one I had last year that causes some of the neuropathy and other nausea and bad side effects.....then a week "off" and begin again. For six cycles, they say. I guess unless this one doesn't bring those damn numbers down either.
But what are you going to do? The alternative is not pretty and so visitors Pam and Brenda (and Jamie, but she left before the dripping started) went to the treatment area and after only four hours from the scheduled time of 11 AM, I got into the treatment chair and started the new process. Everything went fine, I am on steroids and anti-nausea drugs this PM so we all ate heartily for dinner, take out Chinese food and now will soon retire.
More later but this is just is just to let you all know that I am still in there, trying to figure out how to beat this cancer into submission. It doesn't always appear like my team is winning, but I am not going down without a fight. Seriously!
Good night, don't worry and yes, still keep me in your thoughts and prayers. Especially on Tuesdays!
Monday, March 05, 2007
Nine Hours in Purgatory
OK, I am not Catholic and really don't believe in purgatory, (or hell for that matter) but if you were looking for a model, you could try going to the Duke ("pardon our construction") Emergency Room after 5 PM on a night when someone was being treated for a GSW (gunshot wound for those of you who don't watch ER).
Backing up, last Thursday, I was feeling mostly OK in the AM and had made plans with Jamie to go to an outlet store that has very cute children's clothes (which mind you, Sofie doesn't need any of right now, but it was 50-70% off and I had a coupon). We highjacked our friend Susan who had turned me on to this place originally and off we went. When Jamie picked me up at 11, I was having mild "gastric or stomach" pains, nothing new. But a few hours later, it started to get more severe and by the late afternoon, after a 1.5 hour nap, I called my nurse. The pain was now constant, worse upon taking a deeper breath and spreading from tummy to chest. Not left side, however, so I did not think heart attack, but because of those pesky emboli, I was a bit nervous.
Teri advised getting to the ER, which despite my protests, I did. Jamie was at that point at the end of a massage, but came over to go with me and our friend (hero) Sharon came to do emergency Sofie care. Sofie was none too pleased, but she and Sharon get along really well, so that passed.
When we got to the ER about 6-ish, the place was jammed, literally not a seat in the house, anywhere. You have to go through a metal detector. But I checked in with "chest pain" and you know I got triaged right away. They did the usual vitals and then started an IV through my port.
And then we waited. Jamie was afraid of catching something in that room (filled with snot nosed little babies and people making the sounds that one associates with flu....and all sorts of other bad stuff). So she got a mask. With her bald post chemo head and the mask, everyone kept thinking she was the patient. People were being kind of protective of the damn chairs, and this pissed Jamie off. The family members who were well would not get out of their chair so someone who was obviously unwell (Jamie) could sit. Not fun. We ended up outside the bathroom, where periodically someone would run in and you could hear the unsavory sounds of vomiting or retching. Lovely. Very healing.
Anyway, to make this long story shorter, a synopsis: After checking in several times post 7 PM shift change, it was clear that they were jammed more than usual with the "gang related" shooting. There were four to six police officers, they were on "lock-down" in the back, so no visitors could go in there, etc. They were completely overwhelmed, complicated by the fact that the people at the front desk were surly. Not polite, not helpful, not even neutral, surly!
At one point about midnight (we were both very exhausted and I had not yet had the chest CT that was ordered before 7 PM), one of the doctors I know walked by and we chatted briefly. He had not been informed I was there and was surprised we had been waiting, at this point, nearly six hours. I was getting more and more pissed at the general bad functioning of this ER. Yes, this was unusual, but the lock down and GSW madness was over about 11 PM. Yes, they were under construction, but that does not have a thing to do with staff receptiveness or poor attitude.
The providers at Duke are superb, so far, with the distinct exception of the ER personnel and mostly this refers to the lack of attentiveness from the reception/triage folks. If someone had periodically stepped out and apologized a bit for the delay or offered some concrete idea of what was happening, people would not have been so miserable and pissed off, but they did absolutely nothing. And when you asked, they dismissed you with a very negative attitude.
Finally at about 1 AM, I had enough. I went through the door (left open by someone) to the treatment area and found a doctor. I asked him to find out how long until I would be seen. I made it clear I was not moving until I got this information. About 15 minutes later, he came back, very nicely letting me know he had talked to the charge nurse, (Norm) and that I should be able to get the CT "soon". He also gave me all my lab results. At 1:30 or so, when nothing more had happened, I went to the front desk and I asked (very politely) to speak with Norm myself. When he came to the desk, I asked him to step out. I looked him in the eye and said that if he could not get me to the CT area in the next 30 minutes, I was going to pull out my IV and leave. Within 15 minutes I was in a wheelchair and on my way. In all the chaos, my CT order seemed to simply have been overlooked. Following the test, I went to a treatment room. I had already had the EKG and such, so basically, although they did not know what was wrong, they knew it was probably not a heart attack (which I knew in the first place) and not more emboli (which should not happen since I have been on the blood thinners). By about 3 AM, after the medical student (not a doctor, never saw one of those) had examined me, I was ready to go. Jamie was just on the edge of falling down, it was pouring down rain outside, and I had to get home.
Finally, I was discharged, but not without signing the paperwork, to promise to pay the co-payment of $250 for this damned experience. I think they should pay me. I plan to contact patient relations and talk to someone, they (Duke) can do better, even during construction.
I have worked in ER's, I know it is chaotic by nature and tough, but lacking human touch and overall manners does not help. Stay tuned for more on my crusade.
When we got home (my house) Jamie immediately went to bed, but I still had Sofie's snake costume to create. We had gotten all the supplies (her school has a Book Character Day and it was Friday). So about 4:15 or so in the AM, I got out the fabric paints and started painting! I am no artist, but I had it all sketched out, so it went pretty fast and even the glitter paint (for the scales on her back) went on quickly. I dried it a bit, first by blotting with paper towels and then with a hairdryer, since the paint said allow 24 hours and I had about 2.5 hours at that point. And at about 5:30 I crawled into bed to sleep until 7 AM.
Sofie got up bright and early, remembering that I had said it would take extra time to have breakfast and then do all her face and body painting. I painted her face and her arms (even drawing scales to match the ones on the front of her shirt) on her and she was terrific, cooperating all the way. Jamie's blog (you can access it from my site) has a few photos, I will post those later.
All in all, after purgatory, once again, a six and a half year old made my morning bright. As soon as she was at school, I went back to bed, where I mostly slept the rest of the day. That nine hours in purgatory took a lot more than that to catch up!
Backing up, last Thursday, I was feeling mostly OK in the AM and had made plans with Jamie to go to an outlet store that has very cute children's clothes (which mind you, Sofie doesn't need any of right now, but it was 50-70% off and I had a coupon). We highjacked our friend Susan who had turned me on to this place originally and off we went. When Jamie picked me up at 11, I was having mild "gastric or stomach" pains, nothing new. But a few hours later, it started to get more severe and by the late afternoon, after a 1.5 hour nap, I called my nurse. The pain was now constant, worse upon taking a deeper breath and spreading from tummy to chest. Not left side, however, so I did not think heart attack, but because of those pesky emboli, I was a bit nervous.
Teri advised getting to the ER, which despite my protests, I did. Jamie was at that point at the end of a massage, but came over to go with me and our friend (hero) Sharon came to do emergency Sofie care. Sofie was none too pleased, but she and Sharon get along really well, so that passed.
When we got to the ER about 6-ish, the place was jammed, literally not a seat in the house, anywhere. You have to go through a metal detector. But I checked in with "chest pain" and you know I got triaged right away. They did the usual vitals and then started an IV through my port.
And then we waited. Jamie was afraid of catching something in that room (filled with snot nosed little babies and people making the sounds that one associates with flu....and all sorts of other bad stuff). So she got a mask. With her bald post chemo head and the mask, everyone kept thinking she was the patient. People were being kind of protective of the damn chairs, and this pissed Jamie off. The family members who were well would not get out of their chair so someone who was obviously unwell (Jamie) could sit. Not fun. We ended up outside the bathroom, where periodically someone would run in and you could hear the unsavory sounds of vomiting or retching. Lovely. Very healing.
Anyway, to make this long story shorter, a synopsis: After checking in several times post 7 PM shift change, it was clear that they were jammed more than usual with the "gang related" shooting. There were four to six police officers, they were on "lock-down" in the back, so no visitors could go in there, etc. They were completely overwhelmed, complicated by the fact that the people at the front desk were surly. Not polite, not helpful, not even neutral, surly!
At one point about midnight (we were both very exhausted and I had not yet had the chest CT that was ordered before 7 PM), one of the doctors I know walked by and we chatted briefly. He had not been informed I was there and was surprised we had been waiting, at this point, nearly six hours. I was getting more and more pissed at the general bad functioning of this ER. Yes, this was unusual, but the lock down and GSW madness was over about 11 PM. Yes, they were under construction, but that does not have a thing to do with staff receptiveness or poor attitude.
The providers at Duke are superb, so far, with the distinct exception of the ER personnel and mostly this refers to the lack of attentiveness from the reception/triage folks. If someone had periodically stepped out and apologized a bit for the delay or offered some concrete idea of what was happening, people would not have been so miserable and pissed off, but they did absolutely nothing. And when you asked, they dismissed you with a very negative attitude.
Finally at about 1 AM, I had enough. I went through the door (left open by someone) to the treatment area and found a doctor. I asked him to find out how long until I would be seen. I made it clear I was not moving until I got this information. About 15 minutes later, he came back, very nicely letting me know he had talked to the charge nurse, (Norm) and that I should be able to get the CT "soon". He also gave me all my lab results. At 1:30 or so, when nothing more had happened, I went to the front desk and I asked (very politely) to speak with Norm myself. When he came to the desk, I asked him to step out. I looked him in the eye and said that if he could not get me to the CT area in the next 30 minutes, I was going to pull out my IV and leave. Within 15 minutes I was in a wheelchair and on my way. In all the chaos, my CT order seemed to simply have been overlooked. Following the test, I went to a treatment room. I had already had the EKG and such, so basically, although they did not know what was wrong, they knew it was probably not a heart attack (which I knew in the first place) and not more emboli (which should not happen since I have been on the blood thinners). By about 3 AM, after the medical student (not a doctor, never saw one of those) had examined me, I was ready to go. Jamie was just on the edge of falling down, it was pouring down rain outside, and I had to get home.
Finally, I was discharged, but not without signing the paperwork, to promise to pay the co-payment of $250 for this damned experience. I think they should pay me. I plan to contact patient relations and talk to someone, they (Duke) can do better, even during construction.
I have worked in ER's, I know it is chaotic by nature and tough, but lacking human touch and overall manners does not help. Stay tuned for more on my crusade.
When we got home (my house) Jamie immediately went to bed, but I still had Sofie's snake costume to create. We had gotten all the supplies (her school has a Book Character Day and it was Friday). So about 4:15 or so in the AM, I got out the fabric paints and started painting! I am no artist, but I had it all sketched out, so it went pretty fast and even the glitter paint (for the scales on her back) went on quickly. I dried it a bit, first by blotting with paper towels and then with a hairdryer, since the paint said allow 24 hours and I had about 2.5 hours at that point. And at about 5:30 I crawled into bed to sleep until 7 AM.
Sofie got up bright and early, remembering that I had said it would take extra time to have breakfast and then do all her face and body painting. I painted her face and her arms (even drawing scales to match the ones on the front of her shirt) on her and she was terrific, cooperating all the way. Jamie's blog (you can access it from my site) has a few photos, I will post those later.
All in all, after purgatory, once again, a six and a half year old made my morning bright. As soon as she was at school, I went back to bed, where I mostly slept the rest of the day. That nine hours in purgatory took a lot more than that to catch up!
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