I am in Chicago, or more specifically, Arlington Heights, a suburb, with my brother and his family: Dawn, my amazing sister in law who manages to supervise three children (including the world's most precocious two year old) and cook and make it look relatively easy, my brother, who just amazed me with his statistical analysis of Monopoly, and their three kids, Viktor, Jackie and Will.
Sofie and I are staying nearby in a Comfort Inn, which is great, because it has a pool for my daughter the fish. Today, we managed to sleep in until 8 AM, then took about an hour to get ready and then hit the breakfast area. My appetite is coming back slowly, so I was brave and ventured into the world of a cup of coffee this AM, without major incident. Yay! Sofie ate the biggest breakfast I have ever seen her consume, a waffle, one pancake, two sausage patties, bacon, cheese, some melon and a hot chocolate. I was truly impressed. Then, at her suggestion, we "explored" the hotel (we have been here once before). We sat for a while in front of the lovely fireplace and just talked, something I realized that we don't really do as much as I would like in the busy regular day to day world, full of rushing here and there, comings and goings. We talked about animals and how she knows a lot about them and wants to learn more. And just stuff. It was lovely. We then continued until we found the swimming pool. There were a couple of little girls in there, and Sofie clearly wanted to join them, so we ran upstairs to change her into a swimming suit. She played for about an hour in there, mostly in the hot tub. But it was lovely to watch, with light snow flurries visible from the outside windows.
We are not doing anything fancy this year and that is just exactly how I needed and wanted it to be. Just pure family time. I just finished a Monopoly game with Vik, Jackie, my brother David and Sofie observing (she has never played it before). I was the first to go bankrupt, but that was fine. David kept me entertained with statistics on what was the most frequently rolled number and what the benefits of what properties on which areas were. I had a blast playing, it was really fun. Good, old fashioned family time.
Despite the past few weeks of discomfort, and the year of growing surreality, I feel that I have much to be thankful for this year. Family and friends, love beyond measure, and just knowing that life, itself, it a daily blessing and not to be taken lightly. And I am so grateful for my beautiful daughter, who delights me and makes me cry with joy sometimes. I watch her interacting, listen to her words and know that even though I cannot bear the idea that I will not see her grow up, that she will be fine. And I have Jamie to thank for that, in a big way. Taking on single parenthood, when it was not something she signed up for, is a big deal. A really big deal. But she is embracing it with grace, enthusiasm and love. Lots and lots of love. And that is really all that matters.
Family is all about love.
Thursday, November 22, 2007
Tuesday, November 20, 2007
A Little More About Thankfulness
I got to thinking that with all the recent posts about "poor me" I wanted to make sure that I did not forget to share an attitude of gratitude as we move into this week of Thanksgiving. I am especially mindful of this these days, because kindness has come from all over, in lovely and unexpected ways, and it reminds me that I have always basically been in agreement with Anne Frank, who wrote "Despite everything, I believe that people are really good at heart". And I do.
Even when sometimes disappointed by someone, I haven't really wavered in my belief in the goodness of people. That they are really wanting to help.
And so, a short list of recent thank yous, and I hope I don't leave anyone out.
To Jamie, for being there in so many ways and especially for being such a great mom to Sofie and making her feel safe in this chaotic world she is living in,
To Maria and Mohini, for sending fancy chocolates for Halloween,
To Betty and Delma, for bringing dinners and doing the baths and the spelling practices,
To CJ for showing up during some of my worst days with this cold and taking such good care of me, body and soul,
To Annie S, who is going through her own grief, for the beautiful and thoughtful card,
To Amy, for always writing the perfect and supportive emails from far away. We wish you were all closer to us,
To Jamie B for offering her home and her kids for playdates so gently and gracefully,
To Brenda, for entertaining me with current information and lively feedback from the front,
To Pammy for her offer to defend my honor,
To the Covenant Group at ERUUF who raked up 18 bags of leaves and made my yard look a little more managed than it had been,
To my neighbors for the weekly trash assistance and for the emergency dinners,
To Tracey for the evening rescue when I couldn't move a muscle, much less run a bath,
To Kim for the awesome massage,
To Kile, for calling to say I love you just whenever,
To Katy M, for sending 2 lbs of See's chocolates at a time when nausea ruled,
To Jean E for the little bag of luscious smelling lotions and potions,
To my HSL colleagues for the incredible spa basket of treats and toys and for thinking of Sofie in their gift-giving,
To Dave, Susan, and Joanna who are coming to visit soon,
To Jane R for taking good care of Sofie's little psyche,
To Ms. Kelly and Ms. Ewald for being her warm and wonderful teachers,
And to everyone who has called, sent a card, an email or a note to cheer me up. It helps, really it does.
Happy Thanksgiving everyone. With love.
Even when sometimes disappointed by someone, I haven't really wavered in my belief in the goodness of people. That they are really wanting to help.
And so, a short list of recent thank yous, and I hope I don't leave anyone out.
To Jamie, for being there in so many ways and especially for being such a great mom to Sofie and making her feel safe in this chaotic world she is living in,
To Maria and Mohini, for sending fancy chocolates for Halloween,
To Betty and Delma, for bringing dinners and doing the baths and the spelling practices,
To CJ for showing up during some of my worst days with this cold and taking such good care of me, body and soul,
To Annie S, who is going through her own grief, for the beautiful and thoughtful card,
To Amy, for always writing the perfect and supportive emails from far away. We wish you were all closer to us,
To Jamie B for offering her home and her kids for playdates so gently and gracefully,
To Brenda, for entertaining me with current information and lively feedback from the front,
To Pammy for her offer to defend my honor,
To the Covenant Group at ERUUF who raked up 18 bags of leaves and made my yard look a little more managed than it had been,
To my neighbors for the weekly trash assistance and for the emergency dinners,
To Tracey for the evening rescue when I couldn't move a muscle, much less run a bath,
To Kim for the awesome massage,
To Kile, for calling to say I love you just whenever,
To Katy M, for sending 2 lbs of See's chocolates at a time when nausea ruled,
To Jean E for the little bag of luscious smelling lotions and potions,
To my HSL colleagues for the incredible spa basket of treats and toys and for thinking of Sofie in their gift-giving,
To Dave, Susan, and Joanna who are coming to visit soon,
To Jane R for taking good care of Sofie's little psyche,
To Ms. Kelly and Ms. Ewald for being her warm and wonderful teachers,
And to everyone who has called, sent a card, an email or a note to cheer me up. It helps, really it does.
Happy Thanksgiving everyone. With love.
Emerging
The coughing is still there, but less. The snot, well, at least it is clear most of the time. And I have been able to eat small amounts. The weird thing is the vomiting, it comes out of nowhere, often first thing in the AM, as if my body is trying to cleanse itself from toxins that accumulated in the night. I have to say, I am almost used to it now, puking early in the AM (6:10 today) and then just going about my business.
I have gotten lots of sweet emails and a few cards this past week, all of which contributed to my feeling better. And were encouraging, vis a vis the previous post. Today is the last day of my radiation treatments, and Dr. Jones, the radiation oncologist, tells me that the fatigue from this will likely last a month, possibly more. The treatments were only three weeks, so that seems extreme,but it is what it is. Hopefully the cold is on the way out of my body, having lived here about two weeks it seems. So I can begin to sort things out and figure out what "normal" feels like again!
Sofie had a great weekend with Jamie which was terrific. All I did was sleep. I made up the packing list for the Chicago trip, but didn't actually put things into suitcases until yesterday, when I started with the non clothing items I am lugging there. Trains, toys. Things for the nephew that Sofie has outgrown. Usually I send large boxes and I am sure I will again, but this seems like a good way to get a bunch of stuff there in a large suitcase, since we get to have two checked bags each. And we won't be needing that much.
The weather is warming up a bit here, in fact, yesterday, Sofie and I had a good fifteen minute argument about wearing shorts to school. I finally gave up and told her she could wear them but could not utter the words "I am cold" no matter what. So off to school in shorts she went. Her class had a "fall tasting" yesterday, sort of a little buffet Thanksgiving feast, the room parents like me helped to organize and serve the kids (which about wiped me out for the day) and it was great fun. Sofie, ever the little helper girl, stayed after while her classmates were at recess, to help me wash off tables. Gotta love my girl.
So today, I will move slowly but hopefully efficiently into packing mode. After I take her to school, I will get out the list, wash the clothes that need washing and get the packing done. I have to be especially careful to pack all my meds, in their original bottles. And that is a lot of stuff! I should have room for a book too, hopefully. But I have to make sure I have all the meds, including the shots, packed with the prescriptions lest anyone think I plan to do something evil on the plane. As if. I am glad this is a pretty quick flight, one plane only. I cannot imagine the hell it would be to fly across the country on the Wednesday prior to Thanksgiving. So think positive thoughts for us, that I can get out the door before 6 AM tomorrow, get on the plane and get there more or less on time. After that, it should be five days of fun with the cousins, the family and the cold Chicago weather.
Happy Holidays to all. Not sure when I will write again, hopefully while I am in Chicago, but enjoy the holidays, however you are spending them.
I have gotten lots of sweet emails and a few cards this past week, all of which contributed to my feeling better. And were encouraging, vis a vis the previous post. Today is the last day of my radiation treatments, and Dr. Jones, the radiation oncologist, tells me that the fatigue from this will likely last a month, possibly more. The treatments were only three weeks, so that seems extreme,but it is what it is. Hopefully the cold is on the way out of my body, having lived here about two weeks it seems. So I can begin to sort things out and figure out what "normal" feels like again!
Sofie had a great weekend with Jamie which was terrific. All I did was sleep. I made up the packing list for the Chicago trip, but didn't actually put things into suitcases until yesterday, when I started with the non clothing items I am lugging there. Trains, toys. Things for the nephew that Sofie has outgrown. Usually I send large boxes and I am sure I will again, but this seems like a good way to get a bunch of stuff there in a large suitcase, since we get to have two checked bags each. And we won't be needing that much.
The weather is warming up a bit here, in fact, yesterday, Sofie and I had a good fifteen minute argument about wearing shorts to school. I finally gave up and told her she could wear them but could not utter the words "I am cold" no matter what. So off to school in shorts she went. Her class had a "fall tasting" yesterday, sort of a little buffet Thanksgiving feast, the room parents like me helped to organize and serve the kids (which about wiped me out for the day) and it was great fun. Sofie, ever the little helper girl, stayed after while her classmates were at recess, to help me wash off tables. Gotta love my girl.
So today, I will move slowly but hopefully efficiently into packing mode. After I take her to school, I will get out the list, wash the clothes that need washing and get the packing done. I have to be especially careful to pack all my meds, in their original bottles. And that is a lot of stuff! I should have room for a book too, hopefully. But I have to make sure I have all the meds, including the shots, packed with the prescriptions lest anyone think I plan to do something evil on the plane. As if. I am glad this is a pretty quick flight, one plane only. I cannot imagine the hell it would be to fly across the country on the Wednesday prior to Thanksgiving. So think positive thoughts for us, that I can get out the door before 6 AM tomorrow, get on the plane and get there more or less on time. After that, it should be five days of fun with the cousins, the family and the cold Chicago weather.
Happy Holidays to all. Not sure when I will write again, hopefully while I am in Chicago, but enjoy the holidays, however you are spending them.
Saturday, November 17, 2007
Self-Absorbed
This week, I got some feedback from someone in my life about how I have been acting like it is all about me, to the exclusion of being conscious of others. My feelings, my discomforts, my everything. And while this was uncomfortable feedback to be sure, it started me thinking about the reality of my life right now. Which is to say that my day to day life, even to me, is boring and full of things nobody wants to hear about on a daily basis. I cannot believe myself, how much I am worried, focused, whatever, on what is going into my body, what is coming out and how that is all happening! Eating or the lack thereof has become a big focus. I used to really enjoy food, enjoy cooking it, certainly eating it. These days, it is just something else to worry about, am I getting enough in for protein? Do I need to supplement with Ensure or Boost (yeeeech). The whole joy I used to have in going out to dinner is simply gone. I keep hoping this is a temporary place I am in and that some of it will come back.
The other thing I am aware of is how limited my world feels right now. I am trying to read but often am too groggy to make sense of the words. I have finally given up getting the NY Times for now, because I was finding that I was not reading enough of it before the next issue. It is as if my brain is turning to mush sometimes.
And I guess I am spending too much time worrying. About the future, the time I have left, what will happen to my family, all that. When will I have time and energy to clean out that closet? (this is one of those projects my visiting friends will be able to assist with over the upcoming weeks). I still have lots of legal paperwork to move through and get going on. I am trying to make decisions about my will and to feel like I am doing the right thing. Time seems to be slipping by, measured in how many episodes of Jeopardy did I see this week. So yes, I guess I am in a place of intense self-absorption. I don't want to be stuck here but my world seems to have gotten so much smaller in the past month or so.
I am familiar with symptoms of clinical depression: loss of interest in the familiar things of one's life, withdrawal from friends, etc. I don't think it is that, not exactly. There is a difference between lack of energy for something and lack of interest. But for example, I realized recently that I cannot handle movies with dark deep plots, or serious themes right now. I am more interested in light comedies, ones that don't tax my brain too much. So I am going to miss out on a slew of recent films that have deep meaning, but I have to go where I can go. My Netflix membership is on "hold" for now, and Jamie is passing the light comedies to me for watching. And I am still trying to complete reading Eat, Pray, Love, which I really enjoy, but find myself just wandering from as I try to read it in long chunks. Reading has always been a joy and a comfort, so I don't want to lose that!
So much of what was "normal" in my life just a month or so ago, feels compromised or changed. I cannot bear to drink coffee right now, and I love coffee. But the smell and I aren't getting along, so I have switched to tea for the time being.
I was looking forward to going to a lot of Duke Women's basketball games this season. Hopefully once this cold has passed through me and I am really done, I will have the energy to think about that again. I loved going last year and there are some hot games coming up. I just need to have the energy in my body to be able to be there and stay awake!
Self-absorption is boring. I don't know how to answer simple questions like "what's new?". Nothing is much new, unless you want to hear about the changes in my head congestion from two days ago. I haven't been doing anything of interest. Just trying to get through another day, one day at a time.
The person who provided the feedback on all this pointed out this is not new behaviour for me, that I have always been self-absorbed. And that they had a lot of judgments about this and other things I have been doing. That was the tougher part to hear. I have never felt like a perfect person, far from it. But I have tried to interact with people without judgments about them. I find that having lots of judgments makes for an overly controlling relationship, which ultimately doesn't make anyone happy. Judgments on things that are part of my core values, well, that just hurts. And makes me wonder what the heck I have been doing, hanging around with someone who has all that brewing inside them. So letting go of this relationship, which was obviously not working for the other person either, was a good break.
I am not asking anyone to tolerate me if I am being obnoxious, sick or otherwise, but I am in a place right now where my world is small, and scary sometimes and what I need from friends is to be there, without judgments if at all possible, to just help me get through it all. Fortunately, many other people have done just that, shown up and said "what can I do" and not had a preconceived list of what would be "good for me".
If the tables were turned and I were asked to be there for a friend, I would hope that I could do so without bias, judgment or a lack of honest communication. Just being there is sometimes what is needed. It is still hard for me to ask for help with daily things like laundry, but I am getting better, because friends like Betty just offer and make it happen as if it were no big deal. And as I find myself failing health-wise, I am going to need more of that. Even if it feels self-absorbed!
The other thing I am aware of is how limited my world feels right now. I am trying to read but often am too groggy to make sense of the words. I have finally given up getting the NY Times for now, because I was finding that I was not reading enough of it before the next issue. It is as if my brain is turning to mush sometimes.
And I guess I am spending too much time worrying. About the future, the time I have left, what will happen to my family, all that. When will I have time and energy to clean out that closet? (this is one of those projects my visiting friends will be able to assist with over the upcoming weeks). I still have lots of legal paperwork to move through and get going on. I am trying to make decisions about my will and to feel like I am doing the right thing. Time seems to be slipping by, measured in how many episodes of Jeopardy did I see this week. So yes, I guess I am in a place of intense self-absorption. I don't want to be stuck here but my world seems to have gotten so much smaller in the past month or so.
I am familiar with symptoms of clinical depression: loss of interest in the familiar things of one's life, withdrawal from friends, etc. I don't think it is that, not exactly. There is a difference between lack of energy for something and lack of interest. But for example, I realized recently that I cannot handle movies with dark deep plots, or serious themes right now. I am more interested in light comedies, ones that don't tax my brain too much. So I am going to miss out on a slew of recent films that have deep meaning, but I have to go where I can go. My Netflix membership is on "hold" for now, and Jamie is passing the light comedies to me for watching. And I am still trying to complete reading Eat, Pray, Love, which I really enjoy, but find myself just wandering from as I try to read it in long chunks. Reading has always been a joy and a comfort, so I don't want to lose that!
So much of what was "normal" in my life just a month or so ago, feels compromised or changed. I cannot bear to drink coffee right now, and I love coffee. But the smell and I aren't getting along, so I have switched to tea for the time being.
I was looking forward to going to a lot of Duke Women's basketball games this season. Hopefully once this cold has passed through me and I am really done, I will have the energy to think about that again. I loved going last year and there are some hot games coming up. I just need to have the energy in my body to be able to be there and stay awake!
Self-absorption is boring. I don't know how to answer simple questions like "what's new?". Nothing is much new, unless you want to hear about the changes in my head congestion from two days ago. I haven't been doing anything of interest. Just trying to get through another day, one day at a time.
The person who provided the feedback on all this pointed out this is not new behaviour for me, that I have always been self-absorbed. And that they had a lot of judgments about this and other things I have been doing. That was the tougher part to hear. I have never felt like a perfect person, far from it. But I have tried to interact with people without judgments about them. I find that having lots of judgments makes for an overly controlling relationship, which ultimately doesn't make anyone happy. Judgments on things that are part of my core values, well, that just hurts. And makes me wonder what the heck I have been doing, hanging around with someone who has all that brewing inside them. So letting go of this relationship, which was obviously not working for the other person either, was a good break.
I am not asking anyone to tolerate me if I am being obnoxious, sick or otherwise, but I am in a place right now where my world is small, and scary sometimes and what I need from friends is to be there, without judgments if at all possible, to just help me get through it all. Fortunately, many other people have done just that, shown up and said "what can I do" and not had a preconceived list of what would be "good for me".
If the tables were turned and I were asked to be there for a friend, I would hope that I could do so without bias, judgment or a lack of honest communication. Just being there is sometimes what is needed. It is still hard for me to ask for help with daily things like laundry, but I am getting better, because friends like Betty just offer and make it happen as if it were no big deal. And as I find myself failing health-wise, I am going to need more of that. Even if it feels self-absorbed!
Friday, November 16, 2007
Depleted
Yesterday, after waking up and having not one but two bouts of vomiting (without even feeling nauseous), I found myself sitting on my bed about 11 AM, feeling like I was being drained of energy, overwhelmed by this damn cold and all its dripping,coughing and congestion. I tried eating earlier, but to no avail and was having trouble even drinking enough water.
For the first time, I started to wonder if this is what dying feels like; the life force simply leaving your body, leaving you feeling almost unable to move. I got pretty sad, I am so not ready for this. And then I remembered that most likely the cold was dehydrating me so I called the doctors to arrange to come in for a transfusion of fluids, to kind of pump me up again.
I drove myself there, although I was already a bit lightheaded and shaky. They have a little area in radiation oncology just for this purpose, so I guess I am not alone in needing more than just the daily zap of the machine. Within the hour, I was hooked up to the IV pump and fluids were slowly dripping into me. The whole process took over two and a half hours, and I slept through all of it. They also did more blood work (hey, they had access to my vein, how could they resist?). When I was done, they took me over for treatment and then told me that my blood levels were down really low again (accounting for the extra fatigue) and that a blood transfusion was in order. So that is where I am heading this AM, after taking Sofie to school.
Last night, Betty P came over again and took over the feeding, spelling word practice and bathing of Ms. Sofie. Sofie sounded really happy, so that was a good thing. Better to have someone full of life and energy doing these things than a depleted mom who is grumpy.
Sofie's therapist continues to tell us that she is OK, even though I wonder about that. She has expressed to me her frustration that I am in bed too much (and she is right, these days, I get into bed about 5:30 or 6 PM and really don't come out much until morning). I am hopeful that once the cold moves out of my body, which I hope is soon, that I can at least get a bit of zing back and be able to make dinner and eat it with her.
Feeling depleted is just depressing. Sure I can take a pill for that too, but I know what I am feeling and experiencing. And I am getting scared. I don't want the next bunch of months to be like this. I want to experience fun again. And enjoy eating. Ensure doesn't appeal at all, and for the short haul, I may have to do it, but I am not going to like it.
Why is it that they haven't figured out yet how to cure the common cold? Surely if they are making all these strides in cancer and other diseases, the head cold could be managed better?
For the first time, I started to wonder if this is what dying feels like; the life force simply leaving your body, leaving you feeling almost unable to move. I got pretty sad, I am so not ready for this. And then I remembered that most likely the cold was dehydrating me so I called the doctors to arrange to come in for a transfusion of fluids, to kind of pump me up again.
I drove myself there, although I was already a bit lightheaded and shaky. They have a little area in radiation oncology just for this purpose, so I guess I am not alone in needing more than just the daily zap of the machine. Within the hour, I was hooked up to the IV pump and fluids were slowly dripping into me. The whole process took over two and a half hours, and I slept through all of it. They also did more blood work (hey, they had access to my vein, how could they resist?). When I was done, they took me over for treatment and then told me that my blood levels were down really low again (accounting for the extra fatigue) and that a blood transfusion was in order. So that is where I am heading this AM, after taking Sofie to school.
Last night, Betty P came over again and took over the feeding, spelling word practice and bathing of Ms. Sofie. Sofie sounded really happy, so that was a good thing. Better to have someone full of life and energy doing these things than a depleted mom who is grumpy.
Sofie's therapist continues to tell us that she is OK, even though I wonder about that. She has expressed to me her frustration that I am in bed too much (and she is right, these days, I get into bed about 5:30 or 6 PM and really don't come out much until morning). I am hopeful that once the cold moves out of my body, which I hope is soon, that I can at least get a bit of zing back and be able to make dinner and eat it with her.
Feeling depleted is just depressing. Sure I can take a pill for that too, but I know what I am feeling and experiencing. And I am getting scared. I don't want the next bunch of months to be like this. I want to experience fun again. And enjoy eating. Ensure doesn't appeal at all, and for the short haul, I may have to do it, but I am not going to like it.
Why is it that they haven't figured out yet how to cure the common cold? Surely if they are making all these strides in cancer and other diseases, the head cold could be managed better?
Wednesday, November 14, 2007
The Uncommon Cold
So just when I thought perhaps I was turning the corner and feeling a bit better, when I was felled by the common cold. A chest cold, plain and ordinary with mucus and lots of tissues needed. Bummer. It makes me want to just pull the covers up around me and sleep until I cannot sleep anymore!
Every time I get one of these colds, I have to wonder, when they are thinking of alternative fuels, why haven't they considered mucus? I must have generated three gallons yesterday alone, and surely if they could figure out a way to convert that to fuel for vehicles it would solve at least part of the energy crisis. And make people like me, with these stuffy heads and constantly dripping noses feel they were contributing to the greater good. Just a thought.
My friend CJ is visiting from Colorado, just here for a few days added on to a work trip. I have known about this visit for over a month, but did not imagine I would be so incapacitated during this time. She has been wonderful, helping entertain Sofie and do the bath, and we have been catching up. She is in a great place and is just glowing. When you have known someone for so many years, it just makes me feel great to see her in this positive place in her life. We have known each other about 20 years, I think, give or take, from the old Festival circuit. And seeing her now, in such a solid place, at peace and truly happy, is so great.
Today is treatment number ten of fifteen planned radiations. Over the hump and into the home stretch. They (the radiation folks) are the nicest, most efficient folks I have encountered at Duke. Always pleasant, always on time and just caring. Yesterday, I was in a pretty shaky place when I went to radiation, having not eaten much all day and having thrown up what little I did manage to eat. So I got there and they were all soothing and wonderful. I actually will miss seeing them when I am done. But there may be future rounds of radiation, especially if it works as it seems to be doing, on the pain. The tumor area is still kind of bulgy and big (hence the name "the brick") but the pain is definitely lessened and doesn't even kick in sometimes until the afternoon, when I am getting tired. So in the mornings now, I don't even have to take the Vicodin anymore most days. Score!
I am hoping that taking Sudafed and other over the counter meds will kick this cold or at least most of the nasty symptoms out of my body quickly, especially before the travel planned for next week. Thanksgiving airline travel is challenging enough without having a head cold to add to the excitement.
Thanks to everyone who sent little encouraging emails to me. I hope to be getting out of this place of tiredness and general blahs soon and celebrating with my brother David and his family. They have all sorts of kid-centric ideas for the four day visit, so hopefully Sofie will have a great time. I cannot wait to see the kids and my littlest nephew Will, who just turned two. He was only three weeks old the last time I saw him.
Every time I get one of these colds, I have to wonder, when they are thinking of alternative fuels, why haven't they considered mucus? I must have generated three gallons yesterday alone, and surely if they could figure out a way to convert that to fuel for vehicles it would solve at least part of the energy crisis. And make people like me, with these stuffy heads and constantly dripping noses feel they were contributing to the greater good. Just a thought.
My friend CJ is visiting from Colorado, just here for a few days added on to a work trip. I have known about this visit for over a month, but did not imagine I would be so incapacitated during this time. She has been wonderful, helping entertain Sofie and do the bath, and we have been catching up. She is in a great place and is just glowing. When you have known someone for so many years, it just makes me feel great to see her in this positive place in her life. We have known each other about 20 years, I think, give or take, from the old Festival circuit. And seeing her now, in such a solid place, at peace and truly happy, is so great.
Today is treatment number ten of fifteen planned radiations. Over the hump and into the home stretch. They (the radiation folks) are the nicest, most efficient folks I have encountered at Duke. Always pleasant, always on time and just caring. Yesterday, I was in a pretty shaky place when I went to radiation, having not eaten much all day and having thrown up what little I did manage to eat. So I got there and they were all soothing and wonderful. I actually will miss seeing them when I am done. But there may be future rounds of radiation, especially if it works as it seems to be doing, on the pain. The tumor area is still kind of bulgy and big (hence the name "the brick") but the pain is definitely lessened and doesn't even kick in sometimes until the afternoon, when I am getting tired. So in the mornings now, I don't even have to take the Vicodin anymore most days. Score!
I am hoping that taking Sudafed and other over the counter meds will kick this cold or at least most of the nasty symptoms out of my body quickly, especially before the travel planned for next week. Thanksgiving airline travel is challenging enough without having a head cold to add to the excitement.
Thanks to everyone who sent little encouraging emails to me. I hope to be getting out of this place of tiredness and general blahs soon and celebrating with my brother David and his family. They have all sorts of kid-centric ideas for the four day visit, so hopefully Sofie will have a great time. I cannot wait to see the kids and my littlest nephew Will, who just turned two. He was only three weeks old the last time I saw him.
Sunday, November 11, 2007
Turning the Corner?
So the last few days have been better, on all the testy body issues. I am still on the anti-nausea drugs and take the pain killers in the afternoon and evening, but things don't feel so bad. I have been able to eat a few bites here and there, and that seems to make things more "normal". Interestingly, I don't much care what I eat, I still don't have interest in food, but I get stuff down, trying to infuse protein into the mix.
We had a good day yesterday, going to an evening play date with Emma and Jacob and ending up with a movie and art projects. We did not get home until a bit after ten. Sofie was up bright and early this am, before 7, as I was sitting quietly, drinking a cup of tea and enjoying the peace and quiet. We worked a bit on the unfinished art thing, a Dalmatian dog and got it pretty much done. She is playing quietly in her room now, waiting for me to make her get ready to go to ERUUF. She still resists every week.
I am gently reminding myself that these little successful days or moments are good things and that they mean I am not permanently bed bound. My biggest fear right now is the acceleration of the illness and becoming too disabled before I get some of the fun stuff on my list done. Not ready yet!!!! And I have lots of pragmatic stuff incomplete too, although we are working on it.
I continue to give items away and enjoy that. Tomorrow I am going to my workplace for about four hours, to do some must do items (pass along passwords, put out of office messages on the phone and such) and to celebrate Thanksgiving with my work colleagues. It is a bit early for sure, but we do this every year and this was the only day we could reserve the large room needed for it. Nearly everyone comes.
I sent out an email to my colleagues last week that told them I was not coming back. It was tough to write but I know I needed and wanted to do it. I look forward to seeing them tomorrow and over the next few months as I visit the Library and spend a little time there (but not "working"). I am officially on medical leave now, as of November 1st and that is giving me some psychological pause to stop feeling so guilty for not being there. It wasn't according to the master plan, but my body told me what to do and I followed through. Evidently it seems to trump my planner self most times these days.
I hope that I continue to feel better into the next weeks and for Thanksgiving, as we are headed to Chicago area to see my brother and his family. The cousins haven't been together for two years, and that is way too long for kids. So I am excited. I will have to pace myself, nap, etc, but that should be fine.
We had a good day yesterday, going to an evening play date with Emma and Jacob and ending up with a movie and art projects. We did not get home until a bit after ten. Sofie was up bright and early this am, before 7, as I was sitting quietly, drinking a cup of tea and enjoying the peace and quiet. We worked a bit on the unfinished art thing, a Dalmatian dog and got it pretty much done. She is playing quietly in her room now, waiting for me to make her get ready to go to ERUUF. She still resists every week.
I am gently reminding myself that these little successful days or moments are good things and that they mean I am not permanently bed bound. My biggest fear right now is the acceleration of the illness and becoming too disabled before I get some of the fun stuff on my list done. Not ready yet!!!! And I have lots of pragmatic stuff incomplete too, although we are working on it.
I continue to give items away and enjoy that. Tomorrow I am going to my workplace for about four hours, to do some must do items (pass along passwords, put out of office messages on the phone and such) and to celebrate Thanksgiving with my work colleagues. It is a bit early for sure, but we do this every year and this was the only day we could reserve the large room needed for it. Nearly everyone comes.
I sent out an email to my colleagues last week that told them I was not coming back. It was tough to write but I know I needed and wanted to do it. I look forward to seeing them tomorrow and over the next few months as I visit the Library and spend a little time there (but not "working"). I am officially on medical leave now, as of November 1st and that is giving me some psychological pause to stop feeling so guilty for not being there. It wasn't according to the master plan, but my body told me what to do and I followed through. Evidently it seems to trump my planner self most times these days.
I hope that I continue to feel better into the next weeks and for Thanksgiving, as we are headed to Chicago area to see my brother and his family. The cousins haven't been together for two years, and that is way too long for kids. So I am excited. I will have to pace myself, nap, etc, but that should be fine.
Friday, November 09, 2007
Acts of Kindness
Well, first of all, a check in on the body functioning for today. Yesterday was an all time low (not since last April's pre-spring break fiasco have I felt this bad). At radiation, I got seen by my nurse and a doctor, and all sorts of suggestions, more meds, etc. were discussed. They were concerned I might be getting dehydrated, so even transfusing liquids into me was put on the table. I went home, but before I did that, I made myself eat something. And wonder of wonders, it stayed in.
This not eating thing, I have to say, is so bizarre. My whole life since childhood, there have been concerns about eating too much. I cannot ever recall a doctor or anyone saying "are you getting enough to eat?". I tend to have a moment of an out of body experience when these talks happen. As in "who the heck are you talking to?" Cannot be Debra, she eats. But it is me. And eating or not eating has become a focus of this week.
When these times happen, I have noticed I usually focus on a particular food, until such time that the food becomes rejected or just over-done. A long time ago, it was the Hardee's Twin Burger, until the big day when I ate them then puked them up. Haven't been able to even think about them since then. Then it was bagels and cream cheese. Now it seems to be a six inch tuna sub with provolone cheese from Subway (which is because there is one across the street from where I get the radiation). Anyway, I ate one yesterday and didn't puke or get sick or anything!
Friends Betty and Delma came over last night with Chinese food, Sofie's favorite stuff, and fed us and then took over the practicing of the spelling words (there are weekly spelling tests on Fridays for my little second grader), then the bath and bedtime routine. Delma did the bath stuff while Betty helped me fold laundry then massaged my feet for nearly an hour! Pure bliss. I realized by the time they left around 9 something that I was feeling better than I had the whole day. Sure, I had taken more pain meds and anti-nausea stuff, but I really was feeling better. I managed to drink a glass or two of water (to prevent that dehydration stuff) and slept a pretty restful sleep for me, which means I was only up about four times. Including around 3:45 when Sofie arrived with her blankie, snake and stuffed dog. I was too tired to make her go back to bed and besides, she smelled great from her bath, so she slept next to me until I got up, wide awake, at 5:30 this AM. I felt pretty good, but took the anti-nausea meds for prevention and started our day. Got Sofie up and did flash cards and a practice spelling test (she did great!) and got her off to school.
Today is the day I try to get her early, so I plan to head over to radiation a bit early today, and see if I can't make it back to Sofie's school on time for afternoon pick up. We can spend a bit of time together, then she is spending the night with Jamie.
It really is remarkable how the help from friends or folks who offer to help can make such a difference. Last weekend, a covenant group of about six folks from ERUUF came and did yard work, scooping up 18 bags of leaves and generally tidying up the front and back yards. And as an extra bonus, someone with a tall ladder helped change some burned out bulbs. These are things I could not have hoped to get to on my own. And it was fun to get to meet everyone over pizza lunch in my living room. This was pure goodness, offered and received with gratitude.
Same with friends who continue to offer help with kid stuff, food, etc. All of it makes me realize that I have support, even on the days where things seem the most bleak. And that is a wonderful thing.
I am hoping to get past this nausea/pain/bowel/fatigue thing and have a bunch more months of functional time. I have plans, dammit! There are meds for the fatigue (seem to be working) and the radiation is having a positive effect, I think. So it is mostly the nausea and the bowel thing we need to work out and I suspect there is hope there too. I have to have faith that if we keep tweaking the meds and such, there will be a combination that works well. I sure hope so.
Tonight, I am looking forward to sleeping peacefully, reading some from Eat, Pray, Love, the book I have been reading for the past month. I haven't really focused enough on the middle section (Pray) but I love this book and I really want to get to the third section, so that is a short term goal for this weekend.
Sofie has some play time planned for Sunday so I know I have some respite time and things should be fine this weekend. Assuming that the movement towards feeling better continues.
This not eating thing, I have to say, is so bizarre. My whole life since childhood, there have been concerns about eating too much. I cannot ever recall a doctor or anyone saying "are you getting enough to eat?". I tend to have a moment of an out of body experience when these talks happen. As in "who the heck are you talking to?" Cannot be Debra, she eats. But it is me. And eating or not eating has become a focus of this week.
When these times happen, I have noticed I usually focus on a particular food, until such time that the food becomes rejected or just over-done. A long time ago, it was the Hardee's Twin Burger, until the big day when I ate them then puked them up. Haven't been able to even think about them since then. Then it was bagels and cream cheese. Now it seems to be a six inch tuna sub with provolone cheese from Subway (which is because there is one across the street from where I get the radiation). Anyway, I ate one yesterday and didn't puke or get sick or anything!
Friends Betty and Delma came over last night with Chinese food, Sofie's favorite stuff, and fed us and then took over the practicing of the spelling words (there are weekly spelling tests on Fridays for my little second grader), then the bath and bedtime routine. Delma did the bath stuff while Betty helped me fold laundry then massaged my feet for nearly an hour! Pure bliss. I realized by the time they left around 9 something that I was feeling better than I had the whole day. Sure, I had taken more pain meds and anti-nausea stuff, but I really was feeling better. I managed to drink a glass or two of water (to prevent that dehydration stuff) and slept a pretty restful sleep for me, which means I was only up about four times. Including around 3:45 when Sofie arrived with her blankie, snake and stuffed dog. I was too tired to make her go back to bed and besides, she smelled great from her bath, so she slept next to me until I got up, wide awake, at 5:30 this AM. I felt pretty good, but took the anti-nausea meds for prevention and started our day. Got Sofie up and did flash cards and a practice spelling test (she did great!) and got her off to school.
Today is the day I try to get her early, so I plan to head over to radiation a bit early today, and see if I can't make it back to Sofie's school on time for afternoon pick up. We can spend a bit of time together, then she is spending the night with Jamie.
It really is remarkable how the help from friends or folks who offer to help can make such a difference. Last weekend, a covenant group of about six folks from ERUUF came and did yard work, scooping up 18 bags of leaves and generally tidying up the front and back yards. And as an extra bonus, someone with a tall ladder helped change some burned out bulbs. These are things I could not have hoped to get to on my own. And it was fun to get to meet everyone over pizza lunch in my living room. This was pure goodness, offered and received with gratitude.
Same with friends who continue to offer help with kid stuff, food, etc. All of it makes me realize that I have support, even on the days where things seem the most bleak. And that is a wonderful thing.
I am hoping to get past this nausea/pain/bowel/fatigue thing and have a bunch more months of functional time. I have plans, dammit! There are meds for the fatigue (seem to be working) and the radiation is having a positive effect, I think. So it is mostly the nausea and the bowel thing we need to work out and I suspect there is hope there too. I have to have faith that if we keep tweaking the meds and such, there will be a combination that works well. I sure hope so.
Tonight, I am looking forward to sleeping peacefully, reading some from Eat, Pray, Love, the book I have been reading for the past month. I haven't really focused enough on the middle section (Pray) but I love this book and I really want to get to the third section, so that is a short term goal for this weekend.
Sofie has some play time planned for Sunday so I know I have some respite time and things should be fine this weekend. Assuming that the movement towards feeling better continues.
Thursday, November 08, 2007
Each Day is Different
Oh, yeah, how true. Yesterday, I experimented with not taking pain pills first thing, so I might assess if the pills were making me nauseous. I have to say, the experiment wasn't all that revealing. I was sitting right here, about this time (6:30 AM) and emailing, when all of a sudden, waves of nausea. I just did what anyone in the situation would do, and puked my guts up into the trash can. I am getting rather good at this, sad to say. But when the puking was done, I admit I felt better, a bit. So I took on a project that has been on my "To Do" list for the past few days: Changing out the cat litter box. I scoop on a regular basis but it needed total changing. I hadn't been able to get near it the past few days, but what the heck, I had already puked, right? So I did a great job if I do say so myself.
Later in the day, I got a few other things off my list, including taking a box to UPS and picking up clothing at the dry cleaners. None of these things are monumental, but sometimes they feel that way.
The day went OK, pretty much. I was hungry and finally ate something about 2 PM. I also broke down and took one pain pill in the afternoon, but overall, it was a better day for pain. Don't know it that is because of the radiation, as I have only been zapped a few times so far, but maybe. Or maybe it was just a better day.
Later in the evening, I was able to eat a few fork fulls of baked ziti, which was kindly delivered to us by a school parent who offered to bring us dinner. I barely know her, but she wanted to do this. It was delicious, I was able to be off the cooking hook again for Sofie and it worked out so well. I am trying to be open to all the generous offers of friends and near strangers!
Today, I am having a massage in the AM. I really need this, I am tense a lot in the shoulders and neck as well as the new location of my jaw from this clenching thing. Not fun. I don't have a lot on my To Do list today, but will attempt a few things before radiation, then try to nap a bit before getting Sofie. Even short naps of an hour or so help.
Betty and Delma are coming over this PM, with dinner of some sort, and will help me with the bathing and general stuff with Sofie. These days, I find myself needing this help more and more, which worries me. I did not expect to be so debilitated at this time. I am hoping this nausea thing passes soon and the pain is more controlled. I want my life back a bit more.
It is supposed to be 28 degrees out this AM, like winter. It will be another battle to get Sofie to wear her winter jacket. She is still resisting, saying she gets sweaty. But I don't want her to freeze her little tailbone off.
OK, I had better get in gear and get into the shower. It will be interesting to see how this day emerges.
Later in the day, I got a few other things off my list, including taking a box to UPS and picking up clothing at the dry cleaners. None of these things are monumental, but sometimes they feel that way.
The day went OK, pretty much. I was hungry and finally ate something about 2 PM. I also broke down and took one pain pill in the afternoon, but overall, it was a better day for pain. Don't know it that is because of the radiation, as I have only been zapped a few times so far, but maybe. Or maybe it was just a better day.
Later in the evening, I was able to eat a few fork fulls of baked ziti, which was kindly delivered to us by a school parent who offered to bring us dinner. I barely know her, but she wanted to do this. It was delicious, I was able to be off the cooking hook again for Sofie and it worked out so well. I am trying to be open to all the generous offers of friends and near strangers!
Today, I am having a massage in the AM. I really need this, I am tense a lot in the shoulders and neck as well as the new location of my jaw from this clenching thing. Not fun. I don't have a lot on my To Do list today, but will attempt a few things before radiation, then try to nap a bit before getting Sofie. Even short naps of an hour or so help.
Betty and Delma are coming over this PM, with dinner of some sort, and will help me with the bathing and general stuff with Sofie. These days, I find myself needing this help more and more, which worries me. I did not expect to be so debilitated at this time. I am hoping this nausea thing passes soon and the pain is more controlled. I want my life back a bit more.
It is supposed to be 28 degrees out this AM, like winter. It will be another battle to get Sofie to wear her winter jacket. She is still resisting, saying she gets sweaty. But I don't want her to freeze her little tailbone off.
OK, I had better get in gear and get into the shower. It will be interesting to see how this day emerges.
Tuesday, November 06, 2007
Life in Slow Motion
It has been a week since I blogged, and I have had good intentions (a lot of them) but lethargy or something has set in. I move slowly, accomplish little and the day goes by. I have been having radiation since the beginning of November (the day after my biopsy surgery last week) and that has gone pretty well. It is at the same time every day (2:45 PM) and is a smooth process, managed well by the radiation oncology folks. What a difference in that clinic! They should train others at Duke on the art of making eye contact with people, little things like that. It doesn't hurt, so far I don't seem to be having much in the way of side effects (likely to be, yep, you guessed it, nausea and fatigue). How will I be able to tell the new fatigue from the old? Who knows?
I am supposed to have 15 sessions (three weeks), but the holidays might cut out a day or two, unless, as they are planning, they do some on the weekend before Thanksgiving. Personally, I would be happy to be done right before. I get on a plane to Chicago to visit my brother and his family on the 21st, the Wednesday before. I am likely to be pretty fatigued, but otherwise, should be fine if the visit is kid centric and gently paced. I can sit and watch them play.
But back to the slo mo thing. Is it lethargy? Depression? Sadness? All of the above? I do know I still must (and by must I mean it is not really negotiable) have at least one nap a day to survive life as I know it these days. I am experimenting, sometimes I come back after dropping her off and go to sleep for another 90 minutes. That seems to help. I don't sleep well these nights, getting up due to all sorts of things (cats, having to pee frequently due to pressure on my bladder from the tumor, Sofie waking and needing me to find her missing blankie, you name it). And sometimes when I wake up, the pain is back so another pill, and then the wait of 20-30 minutes while it kicks in. Last night it was 1:51 when Sofie came into my room to "snuggle" and then an hour later before I was back to sleep, due to pain and general discomfort. I certainly hope the radiation does help the pain, that will be a great plus.
I have considered sleep aids, but they all say something like "allow seven to eight hours for sleep". As if!!! Who's life is that anyway? Not mine. I would have to sequester the cats and the kid and overdose on the pain pills to get 7 hours of continuous sleep. Oh, yeah, and not drink much.
Speaking of not much, my appetite has just about disappeared. Eating holds no interest for me anymore. This is in a way, the fulfillment of a lifelong dream: to not care about food. But I am now dropping a pound to 1.5 pounds a week and the doctors are not happy. They gave me samples of Boost and Carnation Instant Breakfast the other day. And Ensure. How did this happen to me? I have struggled my whole life with overweight and now, not eating is frowned upon. I get hungry sometimes, I eat four crackers and that covers it. But last night, one piece of pizza caused so much abdominal pain it wasn't worth it. So what am I to do? Drink the Ensure goo, I guess. I have a bunch of samples to try before investing in a particular flavor.
Life in Slo Mo means projects take days, not hours. This is very frustrating, but I am learning that this is also my life. People are stepping forward to help, will write about the past weekend in a separate post. I know and feel loved and cared for. But sometimes, this whole process is lonely. Or something like that.
I am supposed to have 15 sessions (three weeks), but the holidays might cut out a day or two, unless, as they are planning, they do some on the weekend before Thanksgiving. Personally, I would be happy to be done right before. I get on a plane to Chicago to visit my brother and his family on the 21st, the Wednesday before. I am likely to be pretty fatigued, but otherwise, should be fine if the visit is kid centric and gently paced. I can sit and watch them play.
But back to the slo mo thing. Is it lethargy? Depression? Sadness? All of the above? I do know I still must (and by must I mean it is not really negotiable) have at least one nap a day to survive life as I know it these days. I am experimenting, sometimes I come back after dropping her off and go to sleep for another 90 minutes. That seems to help. I don't sleep well these nights, getting up due to all sorts of things (cats, having to pee frequently due to pressure on my bladder from the tumor, Sofie waking and needing me to find her missing blankie, you name it). And sometimes when I wake up, the pain is back so another pill, and then the wait of 20-30 minutes while it kicks in. Last night it was 1:51 when Sofie came into my room to "snuggle" and then an hour later before I was back to sleep, due to pain and general discomfort. I certainly hope the radiation does help the pain, that will be a great plus.
I have considered sleep aids, but they all say something like "allow seven to eight hours for sleep". As if!!! Who's life is that anyway? Not mine. I would have to sequester the cats and the kid and overdose on the pain pills to get 7 hours of continuous sleep. Oh, yeah, and not drink much.
Speaking of not much, my appetite has just about disappeared. Eating holds no interest for me anymore. This is in a way, the fulfillment of a lifelong dream: to not care about food. But I am now dropping a pound to 1.5 pounds a week and the doctors are not happy. They gave me samples of Boost and Carnation Instant Breakfast the other day. And Ensure. How did this happen to me? I have struggled my whole life with overweight and now, not eating is frowned upon. I get hungry sometimes, I eat four crackers and that covers it. But last night, one piece of pizza caused so much abdominal pain it wasn't worth it. So what am I to do? Drink the Ensure goo, I guess. I have a bunch of samples to try before investing in a particular flavor.
Life in Slo Mo means projects take days, not hours. This is very frustrating, but I am learning that this is also my life. People are stepping forward to help, will write about the past weekend in a separate post. I know and feel loved and cared for. But sometimes, this whole process is lonely. Or something like that.
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