For those of you who don't know, Stacy and Clinton are the hosts of "What Not To Wear", a program my sister is addicted to and that I watch every so often, sometimes when I am feeling down about myself and my appearance, because the folks they feature often have much worse wardrobes and fashion "non-sense" than I do.
This week, I watched the program one time, when I was having trouble falling asleep. The rest of the week, I have been plagued by mirror moments, when I realize how far astray I have gotten in this world of fashion. I don't, I cannot, wear high heeled shoes anymore. I go for comfort over fashion most of the time. My hair is "chemo permed" and often looks a bit wild and unruly. It surprises me every morning about how it will look. It is in charge, I am not. It has been in the 90's until just a few days ago, and trying to dress in clothing for work in this heat is a feat unto itself. So this week, I often wore what has become my summer in NC uniform, of sorts: a skirt (patterned, floral even), a lightweight shell and a matching sweater sometimes (the library's temperature is often set on cryogenically preserve, and it is cold in here). I should simply stop looking in the mirror, I guess. Every time I peeked, intentionally or not, I was sort of horrified. The "girls" as S & C refer to them, were hardly perky. My belly won't change, it is just a soft mass of lumps these days, and I am trying hard to remember good posture, so it doesn't look any worse.
I do have a nice pedicure, that helps, but overall, summer is not being kind to me, in terms of how I look. Or something. I reminded myself that nobody was filming me (which they do on this show, secret cameras record all your fashion faux pas for two weeks, and then they force you to watch yourself).
Sigh, it all seems so trite, doesn't it? I have more important things to worry about, cancer and parenting and working and trying to stay alive. But a part of me, deep down, knows I am supposed to care at least a bit more. Maybe that is why I loved The Devil Wears Prada. That wonderful scene when Andi sort of snickers at the issue between the two belts and is given an acerbic lecture about who makes the fashion decisions for whom and why it is central to their universe (the fashionistas). But after all those years working around the impeccable folks from Macy's with Passport, some of it kind of got under my skin I guess.
I will likely let go of this in a day or three and go back to my central theme of clean, comfortable and able to move around! But just today, I am having my moment. I want to turn myself over to experts who can fix this all. But would it be sustainable?
Friday, August 31, 2007
Answered Prayers
This week has flown by and it has been another one of those weeks that shows me that life is just one big roller coaster ride these days.
For the past few weeks, the pain in the cancer "area", also referred to by me as "the brick" (that solid, hard place around my liver) has been painful. It used to be just when I sneezed or laughed hard, or something, but for a few weeks, about three or four, maybe, I have been living with pretty much constant distress. I talked to my health care team, and they suggested taking a stronger pain med, which for me is usually Vicodin. I don't like being doped up and so I mostly resisted, trying to breathe through it at home, at work, all the time. And I noticed that while I was able to sort of become acclimated to the constancy of it, it distracted me from work, and meant I was happier when resting than in play. Not so good for daily life!
Monday of this week it was truly terrible.... Jamie was over, I begged off for a while to lie down, that seems to help a bit. And while I was in that prone position, I sort of pleaded with (I am not quite sure who. God? Higher power? My secret Santa?) to make it stop. Pain really gets in the way of living fully. Combined with fatigue it was just bringing me down.
On Tuesday, I headed off for chemo again in the morning, something that honestly feels quite routine these days. It was one of those mornings where the chemo area was running over an hour behind, so that meant just hanging out, waiting. The treatment itself went quickly, about 1.5 hours in and out, if that. And then I was a free, if sleepy, woman. I had planned to go home, nap for a few hours, then resume the little bit of what was left of my day.
It was after I woke up from the nap that I realized it. The pain was just gone. I think it had been in the morning too, but I was too much on the "auto pilot" of my morning routine with getting Sofie up, dressed in something that doesn't make me shudder,packing her lunch, eating breakfast, and getting to "before school" care so I could be at chemo by 8:30. So maybe I didn't notice. I thought perhaps the pre-meds they gave me for chemo might be doping me still, but later in the evening, I still was pain free!
And this has continued all week. There is a slight amount of discomfort, but not the relentless pain. I am so grateful. I have so much respect for people who live with chronic pain. I don't consider myself a total wuss, but pain just messes with my day. And I want to continue to make each day count, every single one.
Today, Friday, I am writing this with a cup of hot Peet's coffee (I continue to mail order this as I have for the past three years!). I am not nauseous. I don't hurt. I plan to go to work for a nearly full day and have dinner with a friend this evening. Normal. Kind of.
It is still hot and muggy here, I am wishing (praying?) for rain. The deep soaking kind that will rescue my plants and trees who look so thirsty.
I know people have been keeping me in their prayers for the past year. It is so wonderful when I have the sense that the prayer is actually working. Gratitude....it is the best way I know to face each day.
For the past few weeks, the pain in the cancer "area", also referred to by me as "the brick" (that solid, hard place around my liver) has been painful. It used to be just when I sneezed or laughed hard, or something, but for a few weeks, about three or four, maybe, I have been living with pretty much constant distress. I talked to my health care team, and they suggested taking a stronger pain med, which for me is usually Vicodin. I don't like being doped up and so I mostly resisted, trying to breathe through it at home, at work, all the time. And I noticed that while I was able to sort of become acclimated to the constancy of it, it distracted me from work, and meant I was happier when resting than in play. Not so good for daily life!
Monday of this week it was truly terrible.... Jamie was over, I begged off for a while to lie down, that seems to help a bit. And while I was in that prone position, I sort of pleaded with (I am not quite sure who. God? Higher power? My secret Santa?) to make it stop. Pain really gets in the way of living fully. Combined with fatigue it was just bringing me down.
On Tuesday, I headed off for chemo again in the morning, something that honestly feels quite routine these days. It was one of those mornings where the chemo area was running over an hour behind, so that meant just hanging out, waiting. The treatment itself went quickly, about 1.5 hours in and out, if that. And then I was a free, if sleepy, woman. I had planned to go home, nap for a few hours, then resume the little bit of what was left of my day.
It was after I woke up from the nap that I realized it. The pain was just gone. I think it had been in the morning too, but I was too much on the "auto pilot" of my morning routine with getting Sofie up, dressed in something that doesn't make me shudder,packing her lunch, eating breakfast, and getting to "before school" care so I could be at chemo by 8:30. So maybe I didn't notice. I thought perhaps the pre-meds they gave me for chemo might be doping me still, but later in the evening, I still was pain free!
And this has continued all week. There is a slight amount of discomfort, but not the relentless pain. I am so grateful. I have so much respect for people who live with chronic pain. I don't consider myself a total wuss, but pain just messes with my day. And I want to continue to make each day count, every single one.
Today, Friday, I am writing this with a cup of hot Peet's coffee (I continue to mail order this as I have for the past three years!). I am not nauseous. I don't hurt. I plan to go to work for a nearly full day and have dinner with a friend this evening. Normal. Kind of.
It is still hot and muggy here, I am wishing (praying?) for rain. The deep soaking kind that will rescue my plants and trees who look so thirsty.
I know people have been keeping me in their prayers for the past year. It is so wonderful when I have the sense that the prayer is actually working. Gratitude....it is the best way I know to face each day.
Sunday, August 26, 2007
Spending Alone Time with Myself
This weekend, Jamie had Sofie (Sofie was thrilled, she has been asking and asking for more time at Jamie's). I had time all to myself to do with as I wished. Well, not exactly, I have not yet done taxes for 2006, and I had promised my tax preparer Jean that I would absolutely have everything to her by September 10th. So that was part of the big picture plan. The other was also paper connected: organizing my receipts so I can submit my health care and Sofie's "dependent care" expenses so I can get reimbursed with my money that is taken out each month.
In my previous life (whenever that was), I used to be uber-organized. I had a basket for pretty much everything, it all had a place, etc. In the past year or two, I have just lived in a sea of piles...so the first step was "de-trashing" my office, which I started a few weeks ago. My desk was sorted out, into 2006 and 2007 (figured I would get a jump on the current year too). I had tons of "EOB's" to sort through, arrange in chronological order and add up. And tons of receipts to sort, categorize, etc.
And today, Sunday, I am proud to say I got it done. I was in a bunch of belly pain this weekend, so I would not have been much fun. I slept a lot too, took a nap yesterday, slept early last night,
and then plunged in again this am. And I now have what I need to send to Jean to do taxes, albeit by the October 15th extreme extension deadline, but done!
There is a zen like quality to being alone, I think. I don't always fill my head with all sorts of things, like I do in a busy day. Sometimes, I just focus on the task at hand, slowly, methodically, and there is something so amazing when it is completed, a sense of not just accomplishment, but relief.
Beth called on Saturday (twice, actually) to check in. And as much as I wanted to see her and spend some time, I also wanted to keep plodding away, until I had made more of a dent. So I declined. And I ended up feeling tired by about 7 and getting into bed shortly after. I talked to a few folks on the phone during the day, but otherwise, I was alone.
Bit by bit, I am sorting through a ton of paperwork that has surrounded me in this office and in my life for a lot of years. And gently this time, I am being able to shed it, to let go, of most of the papers. The tokens of my work, the tokens of who I have been for so many years. It is positive and it is freeing in a lot of ways. And the office is beginning to be an actual room, not a dumping ground!
Tomorrow I am going to the lab, then off to work. I am planning to do work at least most of the upcoming week, but not full days, so that I can pick Sofie up and spend time with her without being exhausted. Tuesday is chemo, so that day is shot anyway.
She had a great weekend with Jamie, (see Jamie's blog) and came back here to play about mid afternoon.
Tomorrow is the first day of school and I have to go upstairs to get her on the track to getting ready for bed. She is not all that thrilled with going back to school, although she is excited to see friends and loves her teachers.
I just wanted to comment on the wonder, the awe, of being solo sometimes. Not lonely, just alone. I know you are all out there. And that gives me solace a lot of the time.
In my previous life (whenever that was), I used to be uber-organized. I had a basket for pretty much everything, it all had a place, etc. In the past year or two, I have just lived in a sea of piles...so the first step was "de-trashing" my office, which I started a few weeks ago. My desk was sorted out, into 2006 and 2007 (figured I would get a jump on the current year too). I had tons of "EOB's" to sort through, arrange in chronological order and add up. And tons of receipts to sort, categorize, etc.
And today, Sunday, I am proud to say I got it done. I was in a bunch of belly pain this weekend, so I would not have been much fun. I slept a lot too, took a nap yesterday, slept early last night,
and then plunged in again this am. And I now have what I need to send to Jean to do taxes, albeit by the October 15th extreme extension deadline, but done!
There is a zen like quality to being alone, I think. I don't always fill my head with all sorts of things, like I do in a busy day. Sometimes, I just focus on the task at hand, slowly, methodically, and there is something so amazing when it is completed, a sense of not just accomplishment, but relief.
Beth called on Saturday (twice, actually) to check in. And as much as I wanted to see her and spend some time, I also wanted to keep plodding away, until I had made more of a dent. So I declined. And I ended up feeling tired by about 7 and getting into bed shortly after. I talked to a few folks on the phone during the day, but otherwise, I was alone.
Bit by bit, I am sorting through a ton of paperwork that has surrounded me in this office and in my life for a lot of years. And gently this time, I am being able to shed it, to let go, of most of the papers. The tokens of my work, the tokens of who I have been for so many years. It is positive and it is freeing in a lot of ways. And the office is beginning to be an actual room, not a dumping ground!
Tomorrow I am going to the lab, then off to work. I am planning to do work at least most of the upcoming week, but not full days, so that I can pick Sofie up and spend time with her without being exhausted. Tuesday is chemo, so that day is shot anyway.
She had a great weekend with Jamie, (see Jamie's blog) and came back here to play about mid afternoon.
Tomorrow is the first day of school and I have to go upstairs to get her on the track to getting ready for bed. She is not all that thrilled with going back to school, although she is excited to see friends and loves her teachers.
I just wanted to comment on the wonder, the awe, of being solo sometimes. Not lonely, just alone. I know you are all out there. And that gives me solace a lot of the time.
Thursday, August 23, 2007
15 Hours Later
So, last night the mood was pragmatism and all reality and probably sounded sad and discouraging. I have received a bunch of emails from friends and family who all sounded sad. And I was, for certain. But then another day dawned.
And I got up and went to work, attending a lively meeting of the Library Management Council, (LMC) with interesting updates. And when I am at work, I feel renewed a bit, and want to be there. I want to contribute more, but overall, I want to keep working a while more, until I figure out how to leave at least a little mark that I was ever here.
I had a good and honest meeting (weekly type) with my boss later this same day. I am a fortunate person and we kept working at what *can* I do. And she came up with capacity building (for the Library) in terms of re-building the Board, keeping on with established relationships and trying to get us to the next level. Those words, capacity building, lit a little spark in me. It is what I used to do in my consultant role for other organizations, it is what I was good at, and perhaps it is what I can do here to help me move forward, help the Library in a positive way and leave a little Debra legacy.
It is important to me that I do that, leave a little of myself here. I have come to really like this place, it has been so good to me and when I come here and do some work, I feel more alive than the previous blog would have you believe.
So this is just a little update for right this moment, to let ya'll know that I am still OK. Hang in with me, folks, it is going to be a bumpy ride, I am sure, but there is still plenty of ride left!
And I got up and went to work, attending a lively meeting of the Library Management Council, (LMC) with interesting updates. And when I am at work, I feel renewed a bit, and want to be there. I want to contribute more, but overall, I want to keep working a while more, until I figure out how to leave at least a little mark that I was ever here.
I had a good and honest meeting (weekly type) with my boss later this same day. I am a fortunate person and we kept working at what *can* I do. And she came up with capacity building (for the Library) in terms of re-building the Board, keeping on with established relationships and trying to get us to the next level. Those words, capacity building, lit a little spark in me. It is what I used to do in my consultant role for other organizations, it is what I was good at, and perhaps it is what I can do here to help me move forward, help the Library in a positive way and leave a little Debra legacy.
It is important to me that I do that, leave a little of myself here. I have come to really like this place, it has been so good to me and when I come here and do some work, I feel more alive than the previous blog would have you believe.
So this is just a little update for right this moment, to let ya'll know that I am still OK. Hang in with me, folks, it is going to be a bumpy ride, I am sure, but there is still plenty of ride left!
Wednesday, August 22, 2007
A More Somber Update - And Reader Advisement
First of all, the reader advisement: when I write these honest blogs about what is going on, it still doesn't mean I am on my deathbed. I don't have that "cancer patient look, all sucked in cheeks, ashen color or skin and bones. Not hardly. I don't even look sick these days, or so most people tell me. My color is good, I have hardly lost much weight, I am not walking around with that queasy look and except for my energy waning so much more quickly over the day, I look kind of "normal". Whatever that is for me. Oh, and my hair continues with its "chemo perm" all curly and wild. Especially assisted by the humidity that continues to plague my state.
But the news here is not so great. I went in to clinic on Tuesday this week and my numbers, the CA-125, had climbed - a lot. Into the high 300's again, and it was under 100 in mid-June. Not good news. The Gemzar evidently had been working, but just stopped. I have done one cycle of this new drug (Topotecan), which is three consecutive treatments, then one week off. Tuesday I started cycle 2, and I hope with another cycle the numbers start going down again. This time, they added Avastin (made right there in the Bay at Genentech). This is given and clinically tried with lung and colon cancer, is not yet even on the website for Ovarian but evidently has shown some success in earlier stage trials. So I am going to try this too, hoping it will "boost" the effects of the Topotecan.
If you Google any of these drugs you will see in clear print, what is up with them. Especially the Avastin site, where it is described as shown to "prolong life". Not cure, not put into remission, just add time. If you read more, you will see that there are some scary side effects, too, like bowel perforation. I will very mindful of any changes and zip myself to the ER at any sign of pain in the gut!
That is the tough and scary part of what is going on now. The drugs don't seem to be working, the tumor is growing (I can feel it being larger) and it hurts. Not worst pain in the world hurt, but it makes its presence known on a pretty much daily basis, reminding me that it is there.
And so I am facing some tough and challenging choices. I asked my doctor the other day, what would he say about the idea of being on medical disability and he said "if I were you, I would be on it already". He knows my situation of being a parent of a young child (he has met Sofie) and he said, if it were just me and work, and that were it, then maybe I could push through, but being a parent is my number one concern. That, and having enough resources to take care of her while I am alive. I could get short term disability from work, but that is fifty percent of my salary, so I would have to supplement (from my not to be needed retirement fund, not huge, but OK for short term) and then Cobra my insurance, which is expensive. That would last for a year, then unfortunately, the State doesn't qualify me for long term disability until I have five years of "service" and I would be short by 1.5 years. And probably in no shape to come back to work anyway.
So, I struggle with all this. I don't want to spend time at work, I have trouble focusing when I am there, there is so much else on my mine. But work has been so wonderful to me, and I feel so badly that after all this support, since January of this year, nearly 8 months, I would just leave them. So I can stretch the share leave out more, and work 16-20 hours a week, at most. Until I just can't. I wish the long term disability picture were better, if I had read the fine print when I took the job (but who does on that sort of thing) I would have bought private long term disability for the first five years, as extra coverage. At least I have a good life insurance plan for Sofie. But I will lose all the work life insurance after I leave. It all makes no sense, is hard to figure out and I am trying hard to listen to my heart and not just the voices in my pragmatic head, which are all about being responsible, with a bit of Jewish guilt thrown in for good measure.
I am tired all the time and really afraid that working even sixteen to twenty hours a week, will compromise my ability to parent Sofie as well as I want to. Jamie is pitching in a lot of evenings so I can take it slower, but I miss doing things myself and I know tiredness can make me shorter tempered or cranky, and I don’t want that. I wanna be the fun mom too. But Sofie has already informed me I am not much fun anymore and is also asking to spend more time with Jamie. I know she is taking care of herself, she knows a lot about what is going on, whether she opens up to me and talks about it or not. But it hurts. Tonight when I read to her and then we did our little song, I just stroked her shoulders and hair, I love that child so much it hurts. I cannot imagine sometimes that I won't get to see her grow up, as challenging as I know her pre-teen and teen years will be. But she is so little, I have had only five years with her and it isn't fair. I waited all my life (or so it seems) to be a mom and now, I worry that I will leave her and break her heart. And then I worry that she will forget me. I know she loves Jamie and that although I know it won't be easy, they will be OK, but I want to be in on all this growing up stuff.
I have to stop now, I am getting teary. I continue to be hopeful that this new drug combo will buy me more time, maybe even put me into some sort of slowdown on the growth of this cancer. I hope so.
But the news here is not so great. I went in to clinic on Tuesday this week and my numbers, the CA-125, had climbed - a lot. Into the high 300's again, and it was under 100 in mid-June. Not good news. The Gemzar evidently had been working, but just stopped. I have done one cycle of this new drug (Topotecan), which is three consecutive treatments, then one week off. Tuesday I started cycle 2, and I hope with another cycle the numbers start going down again. This time, they added Avastin (made right there in the Bay at Genentech). This is given and clinically tried with lung and colon cancer, is not yet even on the website for Ovarian but evidently has shown some success in earlier stage trials. So I am going to try this too, hoping it will "boost" the effects of the Topotecan.
If you Google any of these drugs you will see in clear print, what is up with them. Especially the Avastin site, where it is described as shown to "prolong life". Not cure, not put into remission, just add time. If you read more, you will see that there are some scary side effects, too, like bowel perforation. I will very mindful of any changes and zip myself to the ER at any sign of pain in the gut!
That is the tough and scary part of what is going on now. The drugs don't seem to be working, the tumor is growing (I can feel it being larger) and it hurts. Not worst pain in the world hurt, but it makes its presence known on a pretty much daily basis, reminding me that it is there.
And so I am facing some tough and challenging choices. I asked my doctor the other day, what would he say about the idea of being on medical disability and he said "if I were you, I would be on it already". He knows my situation of being a parent of a young child (he has met Sofie) and he said, if it were just me and work, and that were it, then maybe I could push through, but being a parent is my number one concern. That, and having enough resources to take care of her while I am alive. I could get short term disability from work, but that is fifty percent of my salary, so I would have to supplement (from my not to be needed retirement fund, not huge, but OK for short term) and then Cobra my insurance, which is expensive. That would last for a year, then unfortunately, the State doesn't qualify me for long term disability until I have five years of "service" and I would be short by 1.5 years. And probably in no shape to come back to work anyway.
So, I struggle with all this. I don't want to spend time at work, I have trouble focusing when I am there, there is so much else on my mine. But work has been so wonderful to me, and I feel so badly that after all this support, since January of this year, nearly 8 months, I would just leave them. So I can stretch the share leave out more, and work 16-20 hours a week, at most. Until I just can't. I wish the long term disability picture were better, if I had read the fine print when I took the job (but who does on that sort of thing) I would have bought private long term disability for the first five years, as extra coverage. At least I have a good life insurance plan for Sofie. But I will lose all the work life insurance after I leave. It all makes no sense, is hard to figure out and I am trying hard to listen to my heart and not just the voices in my pragmatic head, which are all about being responsible, with a bit of Jewish guilt thrown in for good measure.
I am tired all the time and really afraid that working even sixteen to twenty hours a week, will compromise my ability to parent Sofie as well as I want to. Jamie is pitching in a lot of evenings so I can take it slower, but I miss doing things myself and I know tiredness can make me shorter tempered or cranky, and I don’t want that. I wanna be the fun mom too. But Sofie has already informed me I am not much fun anymore and is also asking to spend more time with Jamie. I know she is taking care of herself, she knows a lot about what is going on, whether she opens up to me and talks about it or not. But it hurts. Tonight when I read to her and then we did our little song, I just stroked her shoulders and hair, I love that child so much it hurts. I cannot imagine sometimes that I won't get to see her grow up, as challenging as I know her pre-teen and teen years will be. But she is so little, I have had only five years with her and it isn't fair. I waited all my life (or so it seems) to be a mom and now, I worry that I will leave her and break her heart. And then I worry that she will forget me. I know she loves Jamie and that although I know it won't be easy, they will be OK, but I want to be in on all this growing up stuff.
I have to stop now, I am getting teary. I continue to be hopeful that this new drug combo will buy me more time, maybe even put me into some sort of slowdown on the growth of this cancer. I hope so.
Saturday, August 18, 2007
Stuff
A lazy, slow Saturday morning. A rare occurrence, really, in my life. Sofie is still at camp until tomorrow. My friend Barbara is on her way to visit me, but won't be here for a couple of hours. So I slept late (nearly 8 AM, trust me, late by my standards). And now, with a cup of coffee nearby, I have been just doing a bit of stuff on the computer, and thinking about all the things I have to do here at home, in this last day of "freedom".
It has been interesting, I miss Sofie, but not in a terrible way, and I have loved having unlimited time to myself. I have craved it actually. Unfortunately, a lot of the time has been used for sleep, but even with that, I have enjoyed having time to putter in my house, not really have a directed purpose, other than the constant attempts to try to be more organized. But it has been mellow and good.
I have been going through "stuff" of all kinds, the other day it was a box of jewelry I haven't worn in years. Why is it that something seems to be so very appealing in the buying process and years later is all but forgotten or somehow just not right anymore? So I have decided to re-purpose some of my stuff to other people before I am not around to make those choices. I started with a pair of earrings I got some time in the mid-1980's I think....beautiful dangling earrings in purple with gold moons and stars. I loved them so much I spent much more than I should have at the time. They are still lovely but somehow just not me anymore. But they had a work colleague's name written all over them. So, not knowing if she would find it weird or not, I gave them to her yesterday. She loved them, they look totally perfect on her and I was so happy to have found them a good home.
This is something I think I need to do more of, passing things along or simply shedding them. Not only for the physical clutter they can cause, but also because I am understanding more deeply than I have ever before, my stuff is not who I am. Not the papers I have have saved of my work product, not the clothing I barely wear anymore, not any of that. My stuff is just stuff.
I got rid of a lot of stuff, or so I thought, when I moved to NC. But somehow, what I brought and what I have acquired still spills over and overwhelms me. So more de-cluttering is in order.
Barbara has said she will help me today, and working with a friend might make some of this easier to do. Sometimes I get a little mushy and find it hard to let go. Cards, little notes, things like that.
It doesn't mean I have gone all non materialistic, but these days, the treasures I care most about are the human ones.
It has been interesting, I miss Sofie, but not in a terrible way, and I have loved having unlimited time to myself. I have craved it actually. Unfortunately, a lot of the time has been used for sleep, but even with that, I have enjoyed having time to putter in my house, not really have a directed purpose, other than the constant attempts to try to be more organized. But it has been mellow and good.
I have been going through "stuff" of all kinds, the other day it was a box of jewelry I haven't worn in years. Why is it that something seems to be so very appealing in the buying process and years later is all but forgotten or somehow just not right anymore? So I have decided to re-purpose some of my stuff to other people before I am not around to make those choices. I started with a pair of earrings I got some time in the mid-1980's I think....beautiful dangling earrings in purple with gold moons and stars. I loved them so much I spent much more than I should have at the time. They are still lovely but somehow just not me anymore. But they had a work colleague's name written all over them. So, not knowing if she would find it weird or not, I gave them to her yesterday. She loved them, they look totally perfect on her and I was so happy to have found them a good home.
This is something I think I need to do more of, passing things along or simply shedding them. Not only for the physical clutter they can cause, but also because I am understanding more deeply than I have ever before, my stuff is not who I am. Not the papers I have have saved of my work product, not the clothing I barely wear anymore, not any of that. My stuff is just stuff.
I got rid of a lot of stuff, or so I thought, when I moved to NC. But somehow, what I brought and what I have acquired still spills over and overwhelms me. So more de-cluttering is in order.
Barbara has said she will help me today, and working with a friend might make some of this easier to do. Sometimes I get a little mushy and find it hard to let go. Cards, little notes, things like that.
It doesn't mean I have gone all non materialistic, but these days, the treasures I care most about are the human ones.
Thursday, August 16, 2007
Life, Revealed
Today I am home, having done all of two days at work. I get so exhausted there, and no matter how much I sleep (and I have been getting in excess of seven hours a night), I am tired and I hurt. So today was a planned day off, tomorrow there is a big retirement party at the Library for one of my most favorite colleagues, and I want to be able to participate.
So today, I took on a project: trying to dig out my home office, which has been a mess pretty much since I moved into it in June 2004. I moved boxes of "stuff", work product from my consulting days, samples of things I have written, letters, etc. Not to mention several boxes of memorabilia, a nice name for the stuff of our past lives. Today, I was determined to fill up some of those huge black sturdy bags, the kind people use when they mean business.
Some of it has been pretty easy, old brochures, booklets, lots of materials I picked up here and there, on HIV and other topics, that have been kind of dormant in my life here. And most of the information is online, with better and more current statistics, should I need them.
Then I unearthed a box of personal stuff: a journal, half filled, from 1987-1988, so those of you who remember me then can only imagine the contents of this journal! It was an interesting read, I tended to write only when in angst mode, so it is full of self-questioning, painful feelings of love not quite returned, etc. You know, the usual.
Then I found them: letters from the various women I was dating in that time period. Or whatever you would call what we were doing. These were fun to read and then, without a minute of regret, tear up and shove into the large plastic bags. I did find some from a young woman I had simply forgotten I had corresponded with. She poured our her heart, sending me poetry, long letters (remember, this was before email and blogs). I am assuming I wrote similar ones to her. I can only hope she has lost or destroyed them. But they were a little diversion in this project and then, like pretty much all the years of thank you and birthday cards I had saved, I purged them too.
That part of my life seems so long ago. OK, it was that long ago, about 20 years and I was a 30-something woman with no child to care for. And evidently a lot of time on my hands for fun stuff. It was nice to read the letters, remember that time in my life and move on.
This project will hardly be done today, but I did make a significant dent in it. The ultimate goal was to organize materials for taxes for both last year (yes, I have an extension) and for 2007. With all the medical bills I have, I need to be better organized to submit information for taxes. Doing it this way is too hard. So I am attempting to rectify a bad situation and make it better for the future as well.
I do have to leave the house at some point to go to Costco before the masses do. I have a couple of things, including something for work tomorrow, to pick up. So in a few hours I will get out of here for a bit and get there.
Cannot believe tomorrow is Friday, this week has simply slipped away.
So today, I took on a project: trying to dig out my home office, which has been a mess pretty much since I moved into it in June 2004. I moved boxes of "stuff", work product from my consulting days, samples of things I have written, letters, etc. Not to mention several boxes of memorabilia, a nice name for the stuff of our past lives. Today, I was determined to fill up some of those huge black sturdy bags, the kind people use when they mean business.
Some of it has been pretty easy, old brochures, booklets, lots of materials I picked up here and there, on HIV and other topics, that have been kind of dormant in my life here. And most of the information is online, with better and more current statistics, should I need them.
Then I unearthed a box of personal stuff: a journal, half filled, from 1987-1988, so those of you who remember me then can only imagine the contents of this journal! It was an interesting read, I tended to write only when in angst mode, so it is full of self-questioning, painful feelings of love not quite returned, etc. You know, the usual.
Then I found them: letters from the various women I was dating in that time period. Or whatever you would call what we were doing. These were fun to read and then, without a minute of regret, tear up and shove into the large plastic bags. I did find some from a young woman I had simply forgotten I had corresponded with. She poured our her heart, sending me poetry, long letters (remember, this was before email and blogs). I am assuming I wrote similar ones to her. I can only hope she has lost or destroyed them. But they were a little diversion in this project and then, like pretty much all the years of thank you and birthday cards I had saved, I purged them too.
That part of my life seems so long ago. OK, it was that long ago, about 20 years and I was a 30-something woman with no child to care for. And evidently a lot of time on my hands for fun stuff. It was nice to read the letters, remember that time in my life and move on.
This project will hardly be done today, but I did make a significant dent in it. The ultimate goal was to organize materials for taxes for both last year (yes, I have an extension) and for 2007. With all the medical bills I have, I need to be better organized to submit information for taxes. Doing it this way is too hard. So I am attempting to rectify a bad situation and make it better for the future as well.
I do have to leave the house at some point to go to Costco before the masses do. I have a couple of things, including something for work tomorrow, to pick up. So in a few hours I will get out of here for a bit and get there.
Cannot believe tomorrow is Friday, this week has simply slipped away.
Wednesday, August 15, 2007
B O R I N G
My life. I am so tired of being tired. I know that is not an original thought, but it suits my mood.
I went to work yesterday but was uncomfortable most of the day and exhausted before 2 PM. Jamie and I went out for a child free dinner, which should have been more fun, but I was so tired that I didn't even have much appetite for the (delicious) pasta dish I had ordered. And those of you who know me know that my appetite generally stays intact.
We were home a little after 8 PM, and all I could do was go to bed. I have things all over the house screaming at me "organize", "clean me" etc. But I can't. I am just weary. I tried again to read a bit more of this weekend's NY Times, but I didn't last long. Mostly I just need to sleep.
I hate this. I feel like a prisoner in my body. I have a list of "projects" none of which are all that impressive, but I have to work on them, my house feels cluttered and there is stuff that needs to be dealt with. But it is all I can do in the afternoon/evenings to read or watch something I actually like. Then crash again.
I hope the medications (Procrit) they are giving me will help, I really need them to. I cannot imagine living like this for sustained periods of time. Sofie told me I was no fun anymore and I am beginning to agree with her.
Speaking of Sofie, click on the LINK to Jamie's blog (left side of my page) to see cute photo of Sofie and her counselor.
I went to work yesterday but was uncomfortable most of the day and exhausted before 2 PM. Jamie and I went out for a child free dinner, which should have been more fun, but I was so tired that I didn't even have much appetite for the (delicious) pasta dish I had ordered. And those of you who know me know that my appetite generally stays intact.
We were home a little after 8 PM, and all I could do was go to bed. I have things all over the house screaming at me "organize", "clean me" etc. But I can't. I am just weary. I tried again to read a bit more of this weekend's NY Times, but I didn't last long. Mostly I just need to sleep.
I hate this. I feel like a prisoner in my body. I have a list of "projects" none of which are all that impressive, but I have to work on them, my house feels cluttered and there is stuff that needs to be dealt with. But it is all I can do in the afternoon/evenings to read or watch something I actually like. Then crash again.
I hope the medications (Procrit) they are giving me will help, I really need them to. I cannot imagine living like this for sustained periods of time. Sofie told me I was no fun anymore and I am beginning to agree with her.
Speaking of Sofie, click on the LINK to Jamie's blog (left side of my page) to see cute photo of Sofie and her counselor.
Tuesday, August 14, 2007
Big Girl Stuff
Yesterday morning, we drove Sofie to Camp Kesem, about 1.5 hours from here, for her first ever week of sleep away camp. Camp Kesem is a special camp for kids who have a parent (or in her case, parents) with cancer. It is run by folks from Duke and UNC and is free to families. The purpose is to give families a break and to provide a supportive place for the kids.
We prepped Sofie for this for weeks, discussing it and talking about ways she could cope if she was a little sad or missed us. I think it might have worked. I welled up with tears as we pulled into the parking lot. She was fine, excited. She had an arsenal of supportive objects packed up: Licky, the favored pink snake of the trio, three cats (stuffed) and of course, Yang Yang, her blankie. I talked in advance with the counselors at Camp, they assured me that most kids brought at least one safety object (like the blanket) and that she would not be teased, which was her big fear. It is interesting to watch Sofie become aware of the outside world and the possibility of being teased for sucking her thumb or having her blanket. We assured her she would not be alone!
The ratio at her age group (6-8) was one counselor to three kids, which sounded perfect for a first time camper. We met "Bean" her counselor who looked about twelve to me, but I am sure was a bit older. And then, after her things were taken to her cabin by the staff, she simply kissed us goodbye and left happily with Bean. That was it. So we did good preparation (assisted a lot by her wonderful therapist Jane) or Sofie truly is the independent little soul I think she is. She was able to articulate that AM that sometimes in new situations she feels shy and we talked about that, but essentially, her little social skills are such that she is OK in new situations, after a bit of adjustment time. I raised her that way, I guess. And I am proud of her, I really am. She just turned seven and she really does have a good sense of who she is.
So I now have a week sans child! What to do, what to do. I am so behind on so many things due to exhaustion (I simply poop out by 9 PM and that leaves little or no time to do anything much, not that I had tons of time on my hands prior to having chemo either!). I have to pull things together for taxes, as the extension is "only" until October. Mostly this means going through tons of medical receipts to see how much out of pocket I really did do. I started this process and was quite staggered by it! Prescriptions alone really add up, some have co-pays of $25 or $50 for the really big drugs, like the Lovenox. So in a month, several hundred dollars of co-pays are just out the door.
I want to mention how grateful I am for the Friends of Debra fund. It is (still) hard for me to need or to ask for help, but I am so glad that fund is there. Not just for the medical stuff, but all the times we do take out because Mommy is too tired to think about dinner! Sofie is getting kind of spoiled on the restaurant food thing, and I know in the fall we will go back to more meals at home after school, more normal, but this summer has been a bit out of the usual. Especially now, when I am so tired all the time.
Sofie told me last week that I wasn't much of a fun Mom anymore, "You never do any fun things anymore", to be precise. We talked a bit out how the treatments make me so tired. "I wish you did not have to have those treatments" she said. Me too. I would love to be more peppy and be able to keep up with my seven year old! But I can barely keep up with me.
Jamie has been here a lot, as back up and sometimes I simply have to crash and sleep. Yesterday after dropping Sofie off, I went to the lab for the weekly blood letting and then came home, crawled into bed and crashed for three hours. I woke to eat a bowl of cereal for dinner (something that I just don't do when I am being the parent), and then kind of just hung out for a few more hours before dropping off to sleep again. I awoke this AM, not quite rested, but determined to try to make a "normal" day of it and go to work. So off to the showers with me.
We prepped Sofie for this for weeks, discussing it and talking about ways she could cope if she was a little sad or missed us. I think it might have worked. I welled up with tears as we pulled into the parking lot. She was fine, excited. She had an arsenal of supportive objects packed up: Licky, the favored pink snake of the trio, three cats (stuffed) and of course, Yang Yang, her blankie. I talked in advance with the counselors at Camp, they assured me that most kids brought at least one safety object (like the blanket) and that she would not be teased, which was her big fear. It is interesting to watch Sofie become aware of the outside world and the possibility of being teased for sucking her thumb or having her blanket. We assured her she would not be alone!
The ratio at her age group (6-8) was one counselor to three kids, which sounded perfect for a first time camper. We met "Bean" her counselor who looked about twelve to me, but I am sure was a bit older. And then, after her things were taken to her cabin by the staff, she simply kissed us goodbye and left happily with Bean. That was it. So we did good preparation (assisted a lot by her wonderful therapist Jane) or Sofie truly is the independent little soul I think she is. She was able to articulate that AM that sometimes in new situations she feels shy and we talked about that, but essentially, her little social skills are such that she is OK in new situations, after a bit of adjustment time. I raised her that way, I guess. And I am proud of her, I really am. She just turned seven and she really does have a good sense of who she is.
So I now have a week sans child! What to do, what to do. I am so behind on so many things due to exhaustion (I simply poop out by 9 PM and that leaves little or no time to do anything much, not that I had tons of time on my hands prior to having chemo either!). I have to pull things together for taxes, as the extension is "only" until October. Mostly this means going through tons of medical receipts to see how much out of pocket I really did do. I started this process and was quite staggered by it! Prescriptions alone really add up, some have co-pays of $25 or $50 for the really big drugs, like the Lovenox. So in a month, several hundred dollars of co-pays are just out the door.
I want to mention how grateful I am for the Friends of Debra fund. It is (still) hard for me to need or to ask for help, but I am so glad that fund is there. Not just for the medical stuff, but all the times we do take out because Mommy is too tired to think about dinner! Sofie is getting kind of spoiled on the restaurant food thing, and I know in the fall we will go back to more meals at home after school, more normal, but this summer has been a bit out of the usual. Especially now, when I am so tired all the time.
Sofie told me last week that I wasn't much of a fun Mom anymore, "You never do any fun things anymore", to be precise. We talked a bit out how the treatments make me so tired. "I wish you did not have to have those treatments" she said. Me too. I would love to be more peppy and be able to keep up with my seven year old! But I can barely keep up with me.
Jamie has been here a lot, as back up and sometimes I simply have to crash and sleep. Yesterday after dropping Sofie off, I went to the lab for the weekly blood letting and then came home, crawled into bed and crashed for three hours. I woke to eat a bowl of cereal for dinner (something that I just don't do when I am being the parent), and then kind of just hung out for a few more hours before dropping off to sleep again. I awoke this AM, not quite rested, but determined to try to make a "normal" day of it and go to work. So off to the showers with me.
Thursday, August 09, 2007
Night Musings
I am doing much better this week, really. Darkness lifting, spirit coming back, although still tired. But what the heck am I doing up this late? We went for pizza dinner, it is too hot to even think about cooking, at least 104 here today. Honestly if I weren’t a parent, I would have eaten a peach and called it a night. But Sofie was starving, as she had camp, then her last summer tutoring session and so we joined Jamie at the Mellow Mushroom (which was hardly mellow) and had a great pizza dinner. Then headed home where she had a long bath, including a little play, then the dramatic blow drying of her hair, and one Magic School bus book, then we turn off the lights and we sing our special night song “have beautiful, colorful dreams”. We made that up a few years ago, but we sing it to each other most every night, a sweet tradition. She was asleep in a moment.
Then I had a bunch of paperwork to do, for her doctor visit tomorrow, that of course I had procrastinated until the day before and then I had to “check” email and here I am, 1.5 hours later, still on it.
Mario was just here for a brief visit, in this crazy heat. We ate out, pretty much all the time. But how else to introduce him to happening Durham? Or maybe not so happening, but I did take him to Mama Dips for breakfast the day before he left and to my very favorite cafe, Mad Hatter, today before going to the airport. Mario mentioned that he had gotten a sense from that "dark" blog of a few entries ago that this might be his last visit. Puleeeeeze. I am hardly wasting away. Before I go all Tammy Faye on you all, believe me, if there is a significant weight loss from this cancer, there will be blog or two about it. With photos. I have been trying to lose weight my whole life, if it happens, believe me, I will share! Right now, the steroids and my still fine appetite have me not losing much of anything.
But when I do write about those scary places, or the fears I have, it is not to worry all of you, just to check in with where I am that moment. It usually passes after a while. Life has a way of making you stay present or at least that happens to me. If I go to work, I engage more. If I spend time with Sofie in her little world, how can I not be there for her? Even when I am tired and sometimes grouchy. She and I have been talking more about the treatments, how they make me feel or act. She doesn't like it when I am tired and become short with her and I am not loving this period of her being so obstinate about virtually everything. We are discussing it and trying to find other ways to be with each other. And I find myself saying things like "Because I am the mom, that's why". These things just fly out of my mouth sometimes.
At dinner we had a pretty funny discussion of the fact that I say idiot and stupid about other drivers and Sofie totally busted me on that. Those are two words that are on the "bad" list and we are not supposed to use them. Except I have given her (and me) permission to use idiot when talking about the President. What other word works as well, I ask you? I sometimes explain him by saying that well, he maybe isn't a terrible person, he just makes bad choices. But idiot really does it justice, I think. So my second grader will probably use that in school. I dread to think what they talk about at their little lunch room tables sometimes. I know that is where she learned to make farting noises with her arms, which she thinks are hilarious. I am less amused, but her intensity about doing it is funny.
Digression of Note: I haven't blogged about her seventh birthday, but Jamie did on her blog, you can access that by clicking on the left side of my blog to get to hers. Cute photo of the kid awaits. The whole birthday celebration madness was fun but always makes me wonder, what the heck will we do next year?
But we get through it all, somehow.
I had thought about a before school happens visit to the Bay Area, but with the new treatment schedule that would not have given me even a week, and that is too brief for two people to fly across country. And so, the week after next, I will be a stay at home mom on scorching August days, coming up with creative ways to entertain my kid. I don't have it in me to do that full time, I don't think. But we will have fun, heat or not. Pool, Museum of Life and Science, Mini golf, there is stuff to do.
Sofie is such a pistol. Mouthy, pushing her independence, always trying to get things her way. She says things like “Debra, you don’t understand what I was doing, you never understand me”. I expected this, but not for another oh, six years. She is only seven!!! But wants to be her own girl. A good thing, I suppose, but she is a tough one. We are talking about it. Above all else, I want her to know how much she is loved. Always and forever.
And now, very late, to bed. Good night.
Then I had a bunch of paperwork to do, for her doctor visit tomorrow, that of course I had procrastinated until the day before and then I had to “check” email and here I am, 1.5 hours later, still on it.
Mario was just here for a brief visit, in this crazy heat. We ate out, pretty much all the time. But how else to introduce him to happening Durham? Or maybe not so happening, but I did take him to Mama Dips for breakfast the day before he left and to my very favorite cafe, Mad Hatter, today before going to the airport. Mario mentioned that he had gotten a sense from that "dark" blog of a few entries ago that this might be his last visit. Puleeeeeze. I am hardly wasting away. Before I go all Tammy Faye on you all, believe me, if there is a significant weight loss from this cancer, there will be blog or two about it. With photos. I have been trying to lose weight my whole life, if it happens, believe me, I will share! Right now, the steroids and my still fine appetite have me not losing much of anything.
But when I do write about those scary places, or the fears I have, it is not to worry all of you, just to check in with where I am that moment. It usually passes after a while. Life has a way of making you stay present or at least that happens to me. If I go to work, I engage more. If I spend time with Sofie in her little world, how can I not be there for her? Even when I am tired and sometimes grouchy. She and I have been talking more about the treatments, how they make me feel or act. She doesn't like it when I am tired and become short with her and I am not loving this period of her being so obstinate about virtually everything. We are discussing it and trying to find other ways to be with each other. And I find myself saying things like "Because I am the mom, that's why". These things just fly out of my mouth sometimes.
At dinner we had a pretty funny discussion of the fact that I say idiot and stupid about other drivers and Sofie totally busted me on that. Those are two words that are on the "bad" list and we are not supposed to use them. Except I have given her (and me) permission to use idiot when talking about the President. What other word works as well, I ask you? I sometimes explain him by saying that well, he maybe isn't a terrible person, he just makes bad choices. But idiot really does it justice, I think. So my second grader will probably use that in school. I dread to think what they talk about at their little lunch room tables sometimes. I know that is where she learned to make farting noises with her arms, which she thinks are hilarious. I am less amused, but her intensity about doing it is funny.
Digression of Note: I haven't blogged about her seventh birthday, but Jamie did on her blog, you can access that by clicking on the left side of my blog to get to hers. Cute photo of the kid awaits. The whole birthday celebration madness was fun but always makes me wonder, what the heck will we do next year?
But we get through it all, somehow.
I had thought about a before school happens visit to the Bay Area, but with the new treatment schedule that would not have given me even a week, and that is too brief for two people to fly across country. And so, the week after next, I will be a stay at home mom on scorching August days, coming up with creative ways to entertain my kid. I don't have it in me to do that full time, I don't think. But we will have fun, heat or not. Pool, Museum of Life and Science, Mini golf, there is stuff to do.
Sofie is such a pistol. Mouthy, pushing her independence, always trying to get things her way. She says things like “Debra, you don’t understand what I was doing, you never understand me”. I expected this, but not for another oh, six years. She is only seven!!! But wants to be her own girl. A good thing, I suppose, but she is a tough one. We are talking about it. Above all else, I want her to know how much she is loved. Always and forever.
And now, very late, to bed. Good night.
Wednesday, August 08, 2007
Caution: Human Moving Slowly
Since Monday it has been oppressively hot, getting hotter each day and more humid. Mario is having a short visit and was in Savannah GA before this, so he was not completely taken aback by our lovely weather (at this point, Sofie would point out I was being sarcastic, in case that was not obvious). So we Triangle folks are moving slow these days, which suits me fine. I can use the perfect combo for my excuse: the heat combined with the cancer treatment fatigue. Who would expect me to be bouncing around anyway?
It is so humid today that getting out of the air conditioned car, my glasses fogged up. Yesterday we beat the heat by being like good suburbanites: we went to a movie and the mall. I had held off seeing Hairspray until his arrival, it seemed to be a movie that wanted a gay boyfriend. So after chemo yesterday, we took off for the mall. And we had a great time, the movie was delightful and upbeat, something I need in a movie these days, and then we had a late lunch at an uncrowded Cheesecake Factory. I never go there because usually it is packed and the wait is over 40 minutes. But it was lovely in mid-afternoon. We had a hearty "lunch" and figured it might just take us through the evening too.
Even shopping was exhausting in this weather, just looking. We left to pick up Sofie from camp and got a phone call for a spontaneous birthday ice cream celebration in 45 minutes. What the heck, when it is 99 degrees, ice cream for dinner, even with a kid, sounds pretty darn good. So off we went to the ice cream place (the kind that mixes stuff into the ice cream for even more richness) and celebrated with Sharon. Sofie ate a real dinner at about 8:30 PM.
We all talked about the weather, the need to move slowly (this is a Southern thang for a reason). And we talked about me.
During lunch, Mario and I talked a lot, about folks "back there" in CA and about my recent news on the blog before this one. I guess people in CA who haven't seen me have a more vivid idea in their heads that I am sick and dying and look like it. The truth is about as opposite as you can get. This new drug is better nausea-wise, I feel fine pretty much, the steroids keep the appetite up, more than I wish, and I look "normal". And really, except for extreme fatigue and some neuropathy stuff in my feet, I feel pretty much OK. The overwhelming sadness of a few weeks ago is being talked through in therapy and the companionship with visitors makes it better too.
I did not want people to think I was going all Tammy Faye on them right now...believe me, if I have a significant weight loss, that will make it to the blog. After a lifetime of trying to lose weight, that would not be something I would keep private, I promise you.
My struggles right now, besides the fatigue, are trying to figure out the unfigurable: how long do I have and what the heck do I want to do with that time? There is the issue of working vs. not working, I am not quite ready to go on disability, but on the other hand, it is hard to engage at work. I feel like I am constantly starting over, and that is not good. Others have been more reassuring, saying that I need to look at what I have accomplished and that previous directors of development did not do what I have done. Which means they must have sat on their butts and done nothing, because I don't feel that successful, not by a long shot. I feel mostly like I am coasting and strategizing, but not implementing. And that is what I have to focus on if I am to continue to think of myself as actually working.
So that is the issue, right now. Working...how much, when I think it would be great to be more home centered with Sofie, come fall. So perhaps I will work it out so I use my better times (mornings and early afternoons) and then get her earlier than previously. That might be a solution for now. I want to spend time with her when we are both not tired and cranky.
I imagine I will get used to the fatigue levels somewhat, it is amazing what you can incorporate when it is simply not in your world to change it. And the drug they are giving me, Procrit, should kick in a bit soon, I hope, to raise those red counts. Now we just have to be super-careful about the white counts. Are you bored by all of this yet? I am but it is a regular part of my everyday life, so there you have it.
Sofie is finishing up with day camps this week and next Monday, we take her for a week at Camp Kesem. A sleep away camp, specially designed for kids who have a parent (or in her sorry case, parents) with cancer. I hope she won't be homesick, not too much, anyway, and that this experience will be good for her, helping her to open up. I want her to talk to me about her scary feelings if she has them. So far, I think she is protecting me and only talks about how I never have fun with her anymore, not ever! This is more her little stubborn seven year old self talking. The other day, the drama escalated to "you are ruining my whole life, Debra!" because I told her she had to go to tutoring even if it was hot outside.
But seven she is, the birthday splash party was fun, for the kids at least, and she was happily gifted with great presents. So all good. It is wonderful to see that she is developing these friendships with kids from both school and camp and that I can take a little peek at how that might evolve over time. I like it best when the kid has a cool parent, but sometimes, it is just about the children. And the parents, like one new couple we met via their daughter, might be as far away from someone who would be in my life as possible, but it kind of passes by that part, at least sometimes.
OK, time for a shower, and we are headed out for brunch and a rousing scrabble game. And then we will have a leisurely day. The only kind you should have when it is this darn hot!!!
It is so humid today that getting out of the air conditioned car, my glasses fogged up. Yesterday we beat the heat by being like good suburbanites: we went to a movie and the mall. I had held off seeing Hairspray until his arrival, it seemed to be a movie that wanted a gay boyfriend. So after chemo yesterday, we took off for the mall. And we had a great time, the movie was delightful and upbeat, something I need in a movie these days, and then we had a late lunch at an uncrowded Cheesecake Factory. I never go there because usually it is packed and the wait is over 40 minutes. But it was lovely in mid-afternoon. We had a hearty "lunch" and figured it might just take us through the evening too.
Even shopping was exhausting in this weather, just looking. We left to pick up Sofie from camp and got a phone call for a spontaneous birthday ice cream celebration in 45 minutes. What the heck, when it is 99 degrees, ice cream for dinner, even with a kid, sounds pretty darn good. So off we went to the ice cream place (the kind that mixes stuff into the ice cream for even more richness) and celebrated with Sharon. Sofie ate a real dinner at about 8:30 PM.
We all talked about the weather, the need to move slowly (this is a Southern thang for a reason). And we talked about me.
During lunch, Mario and I talked a lot, about folks "back there" in CA and about my recent news on the blog before this one. I guess people in CA who haven't seen me have a more vivid idea in their heads that I am sick and dying and look like it. The truth is about as opposite as you can get. This new drug is better nausea-wise, I feel fine pretty much, the steroids keep the appetite up, more than I wish, and I look "normal". And really, except for extreme fatigue and some neuropathy stuff in my feet, I feel pretty much OK. The overwhelming sadness of a few weeks ago is being talked through in therapy and the companionship with visitors makes it better too.
I did not want people to think I was going all Tammy Faye on them right now...believe me, if I have a significant weight loss, that will make it to the blog. After a lifetime of trying to lose weight, that would not be something I would keep private, I promise you.
My struggles right now, besides the fatigue, are trying to figure out the unfigurable: how long do I have and what the heck do I want to do with that time? There is the issue of working vs. not working, I am not quite ready to go on disability, but on the other hand, it is hard to engage at work. I feel like I am constantly starting over, and that is not good. Others have been more reassuring, saying that I need to look at what I have accomplished and that previous directors of development did not do what I have done. Which means they must have sat on their butts and done nothing, because I don't feel that successful, not by a long shot. I feel mostly like I am coasting and strategizing, but not implementing. And that is what I have to focus on if I am to continue to think of myself as actually working.
So that is the issue, right now. Working...how much, when I think it would be great to be more home centered with Sofie, come fall. So perhaps I will work it out so I use my better times (mornings and early afternoons) and then get her earlier than previously. That might be a solution for now. I want to spend time with her when we are both not tired and cranky.
I imagine I will get used to the fatigue levels somewhat, it is amazing what you can incorporate when it is simply not in your world to change it. And the drug they are giving me, Procrit, should kick in a bit soon, I hope, to raise those red counts. Now we just have to be super-careful about the white counts. Are you bored by all of this yet? I am but it is a regular part of my everyday life, so there you have it.
Sofie is finishing up with day camps this week and next Monday, we take her for a week at Camp Kesem. A sleep away camp, specially designed for kids who have a parent (or in her sorry case, parents) with cancer. I hope she won't be homesick, not too much, anyway, and that this experience will be good for her, helping her to open up. I want her to talk to me about her scary feelings if she has them. So far, I think she is protecting me and only talks about how I never have fun with her anymore, not ever! This is more her little stubborn seven year old self talking. The other day, the drama escalated to "you are ruining my whole life, Debra!" because I told her she had to go to tutoring even if it was hot outside.
But seven she is, the birthday splash party was fun, for the kids at least, and she was happily gifted with great presents. So all good. It is wonderful to see that she is developing these friendships with kids from both school and camp and that I can take a little peek at how that might evolve over time. I like it best when the kid has a cool parent, but sometimes, it is just about the children. And the parents, like one new couple we met via their daughter, might be as far away from someone who would be in my life as possible, but it kind of passes by that part, at least sometimes.
OK, time for a shower, and we are headed out for brunch and a rousing scrabble game. And then we will have a leisurely day. The only kind you should have when it is this darn hot!!!
Tuesday, July 31, 2007
My Surreal Life: A True Reality Show
It was an awesome weekend. Following a central development retreat on Thursday and Friday in Pinehurst (or near there, there is Pine everything in that part of the state), I drove four hours to Asheville for the weekend and spent the time being taken care of, lovingly, by Barbara and Jacque. We paced ourselves gently on Friday PM, eating an in home dinner with a few friends. Then Saturday we went to Blowing Rock to have spa day at Westglow! Ahhhhh. It did not start out perfectly, I was informed upon our (slightly late due to bad directions) arrival that my therapist had called in so they only had a male available. Would that be a problem? I thought about it for a minute and realized it was. I am just not comfortable having my body massaged, exfoliated, and poked at by a guy. So I took a deep breath and said yes. I wasn't angry, just clear. It was, so how might we work it out? The first treatment was cancelled (body scrub, I could live without that one) and the rest was re-arranged a bit, so after a delicious spa lunch, my two hour hot stone massage (complete with lovely stretching in a nice passive way, assisted by the massage therapist) and my facial with complimentary foot and head rub (ahhhhh) were done by women. I was in heaven, truly lovely to have my otherwise lumpy and toxin ridden body treated so well. There is something about hot stone massage that I just relax into, it is very therapeutic for both physical relaxation as well as mental!
We listened to the soundtrack of Hairspray on our drive home arrived home after 7:30 PM and I was content to be a couch critter, reading my summer read du jour. Sunday was mellow again, and Barbara and I made time to discuss the future planning that she is involved in (she is going to be the person who manages all things financial for me on Sofie's behalf, after). This discussion was necessary and important, but periodically, I kept having these short lapses into surreality. I am planning "as if" I don't have all the time in the world. Because, most likely, I don't. But I still find myself going into some weird moments of denial or disbelief as I imagine not knowing my daughter at 10. Or seeing her through the trials and tribulations of middle school and high school. (ground rules include family time as a priority, dinners together most school nights, no tattoos at all until at least 16, then if she really wants one, if it is tasteful, and not in a highly visible area....and what about driving and a car? And college. I want to be there to proofread her applications. But reality check: I have this cancer, and it is growing and the odds are not all that great. So I have to plan, really clearly and with intention and trust that she will be fine. But it is very hard. And not at all what I had imagined my life with her to be.
Thank you, Barbara and Jacque, for taking care of me this weekend, for the spa stuff, for all of it. Sometimes, I just need that, to be totally in someone else's hands. So I don't have to think about things. Or do much at all. And thank you Jamie, for being with Sofie, so I could.
Today was the second chemo of this first cycle of the fourth drug. Following that? Last week went pretty well, the drugs did their jobs and kept the nausea away and when I pull (gently) on my hair, so far it is staying put. I picked up the medical recertification form that my work needed (it has been about a year since I submitted one). Last time, the certificate had a more short term approach: complete chemotherapy in August, should be able to return to "normal" full time work by mid-October. And I was! I was back to normal. Only it wasn't to be a long view on that.
This time, the diagnosis said it all: Progressive Ovarian Cancer. Time frame unknown for treatment. Time frame unknown for limitations due to treatments, low counts, etc. I have been struggling with labels lately. I was fine last year with cancer survivor, even cancer patient while the treatments were being completed. But now it is harder. Am I employed full time? Yes, technically, but I cannot really be counted on for a full day and frankly, my heart and mind are just not there, even when I try. I am thinking, more often now, of the to do list for my life. Summer is flying by, how is that possible? Have I spent enough time with Sofie this summer? Not really, there is never "enough time" but yes, we have spent some good times together. And she doesn't need me hovering over her. She plays just fine by herself, thank you. And loves camp. It does make her tired, so evenings are kind of mellow for us. The bedtime ritual of singing to each other ("have beautiful, colorful dreams", a song of our own creations) and snuggling or rubbing her tummy are precious. Sometimes that is when the tears come.
But the labels. I am now "living with cancer" on a daily basis. But am I dying from it? I choose mostly to say not now (yes, I know we are all dying every day, but you know what I mean). But do I want to spend six months, a year, working when I could/should be home at 3:10 PM to greet my daughter and help her get through her homework earlier? Isn't that what is more important? I have to make choices, maybe not today, but I am obsessing about them a bit too much these days. No crystal ball exists to mark a date or a timeline so I can work out the details. I am trying hard to be OK with all this, to listen to my heart, not my pragmatic head, but I don't have a lot of answers. If Lifetime (television for woman and gay men) was doing a reality show of my life, they would see me in overwhelm most days lately. Sorting through piles of stuff, papers, etc and trying to organize it for the future. Whatever that is.
We listened to the soundtrack of Hairspray on our drive home arrived home after 7:30 PM and I was content to be a couch critter, reading my summer read du jour. Sunday was mellow again, and Barbara and I made time to discuss the future planning that she is involved in (she is going to be the person who manages all things financial for me on Sofie's behalf, after). This discussion was necessary and important, but periodically, I kept having these short lapses into surreality. I am planning "as if" I don't have all the time in the world. Because, most likely, I don't. But I still find myself going into some weird moments of denial or disbelief as I imagine not knowing my daughter at 10. Or seeing her through the trials and tribulations of middle school and high school. (ground rules include family time as a priority, dinners together most school nights, no tattoos at all until at least 16, then if she really wants one, if it is tasteful, and not in a highly visible area....and what about driving and a car? And college. I want to be there to proofread her applications. But reality check: I have this cancer, and it is growing and the odds are not all that great. So I have to plan, really clearly and with intention and trust that she will be fine. But it is very hard. And not at all what I had imagined my life with her to be.
Thank you, Barbara and Jacque, for taking care of me this weekend, for the spa stuff, for all of it. Sometimes, I just need that, to be totally in someone else's hands. So I don't have to think about things. Or do much at all. And thank you Jamie, for being with Sofie, so I could.
Today was the second chemo of this first cycle of the fourth drug. Following that? Last week went pretty well, the drugs did their jobs and kept the nausea away and when I pull (gently) on my hair, so far it is staying put. I picked up the medical recertification form that my work needed (it has been about a year since I submitted one). Last time, the certificate had a more short term approach: complete chemotherapy in August, should be able to return to "normal" full time work by mid-October. And I was! I was back to normal. Only it wasn't to be a long view on that.
This time, the diagnosis said it all: Progressive Ovarian Cancer. Time frame unknown for treatment. Time frame unknown for limitations due to treatments, low counts, etc. I have been struggling with labels lately. I was fine last year with cancer survivor, even cancer patient while the treatments were being completed. But now it is harder. Am I employed full time? Yes, technically, but I cannot really be counted on for a full day and frankly, my heart and mind are just not there, even when I try. I am thinking, more often now, of the to do list for my life. Summer is flying by, how is that possible? Have I spent enough time with Sofie this summer? Not really, there is never "enough time" but yes, we have spent some good times together. And she doesn't need me hovering over her. She plays just fine by herself, thank you. And loves camp. It does make her tired, so evenings are kind of mellow for us. The bedtime ritual of singing to each other ("have beautiful, colorful dreams", a song of our own creations) and snuggling or rubbing her tummy are precious. Sometimes that is when the tears come.
But the labels. I am now "living with cancer" on a daily basis. But am I dying from it? I choose mostly to say not now (yes, I know we are all dying every day, but you know what I mean). But do I want to spend six months, a year, working when I could/should be home at 3:10 PM to greet my daughter and help her get through her homework earlier? Isn't that what is more important? I have to make choices, maybe not today, but I am obsessing about them a bit too much these days. No crystal ball exists to mark a date or a timeline so I can work out the details. I am trying hard to be OK with all this, to listen to my heart, not my pragmatic head, but I don't have a lot of answers. If Lifetime (television for woman and gay men) was doing a reality show of my life, they would see me in overwhelm most days lately. Sorting through piles of stuff, papers, etc and trying to organize it for the future. Whatever that is.
Wednesday, July 25, 2007
New Day, New Chemo
On Tuesday this week, I had the first dose of the new chemotherapy. For those who are counting, this is the fourth drug or drug combination since April of 2006, when the first
"preventative" chemo cocktail of Taxol and Carboplatin was served up for six cycles. Then came Doxil (the one where preventing the weird side effects had me icing my hands and feet with icepacks three times a day and fearing stoves and toasters and hot showers). Fortunately, no side effects manifested. Not so fortunately, the Doxil did absolutely nada. But it did come with a great purple gift bag, which I still use, filled with lots of fun stuff. Then I was on Gemcitabine (Gemzar) and Gemzar with Carbo combination. It seemed to be working, the all important numbers were going down, nicely and the belly pain stopped for a while.
Then, at the last treatment of cycle six (with no real end in sight at that point), my white blood count dropped too low to treat me, so a treatment was skipped, then we were on the cruise. When I came back four weeks had passed, and those numbers had elevated a bit (gone up 8 points) but I was told no worries. Within the zone. To be expected.
At the clinic visit, I told the new fellow that I was feeling the belly pain again, and mentioned that my left hip had been hurting for over three weeks for no apparent reason. As I described in the previous blog, the path led to the CT scan and then to pulling the Gemzar/Carbo drugs and switching me to the newest in the drug arsenal: Topotecan HCL (also called Hycamtin). Topotecan sounds like an exotic tropical parrot or a native American tribe from Upstate NY.
(By the way, the hip CT was negative for cancer, I had an X-ray the other day, no results yet, but the pain seems to be subsiding since I had that fall last week...go figure!!)
So the newdrug (Google it, I did) is one that is given to women when the first and second line ovarian cancer drugs don't seem to work or stop working. It is a quick infusion treatment, lasting only half an hour after the pre-medications are administered. So I can be out of there by noon or before, if I get an early appointment, after camp drop off.
I took this on Tuesday, and other than being really sleepy (from the "relaxing" medications they drip in first) and then taking the anti-nausea drugs and steroids, I am finding myself tonight, feeling fine. Pumped a bit on the steroids, so I am awake at nearly 11 PM, which was not the case previously, but doing OK. Trying to fight the munchies that come with the steroid pop.
I am trying to be optimistic still, and hoping this one will stop or at least slow down the progression of the disease and buy more time. At the same time, I am trying to accelerate some of the things on my "to do list" of getting my affairs in order. It's just me, being pragmatic again, but with a bit more of a motivation. So getting it all together, step by step.
Sofie is getting excited about going to Camp Kesem at the end of her summer vacation. This is a free camp for kids who have a parent (or in her case, parents) with Cancer, run by volunteers from Duke, UNC and other places. It is a week of sleep away camp, her first time away from home for more than an overnight. She is a little anxious about missing us, and mostly worried that she might be teased for bringing Yang Yang, which is what her blankie is called these days. But we are all reassuring her that all the kids there have a Mom or Dad with cancer and they will be bringing their blankies or stuffies too. And the instructions from camp even said this!
I will miss her for that week, but I hope that she will be able to articulate her feelings to people who might share her worries. She and Jamie have talked about whether she thinks I might die (at this point, she says she doesn't). She just knows I get really tired and crabby some times from treatment. But today, the steroids helped me be able to push her on a special swing device at the park for a while. Sometimes I understand what Barry Bonds might have been thinking *if* he actually took performance enhancing drugs. They do make me feel more like superwoman.
So tomorrow, back to work. I have a one and a half day Central Development retreat near Pinehurst NC (where there are all sorts of famous golfing places evidently). After the retreat ends on Friday, I am heading to Asheville to see Barbara and Jacque and on Saturday --- Spa Day! It was to have been a celebration of ending chemo in June, but I am still looking forward to it so much. A whole day to relax and feel pampered.
Chemo this time will be three weeks on and one week off. It makes it seem like it is every week, pretty much. I lose track of the weeks, the months. I cannot believe July is nearly over. It seems like summer just started. My work week starts, stops and starts again, I feel like I am not accomplishing much.
In the months to come, I have to see how I feel and then make some decisions about working. If the treatments continue for a long time (as they have suggested they might), that is going to make working anywhere near full time impossible. I love the Health Sciences Library and my colleagues, but they deserve more. My boss has been tremendous all through this, but my body won't get better, and at some point, I have to decide what to do, what is best for me, for them, for the whole unpredictable situation.
Meanwhile, July brought upon it a new period of meeting my deductible and co-insurance cap before they start to pick up the costs for most of my treatment stuff. So not looking forward to the out of pocket costs, thank goodness for the generosity of so many friends who have contributed to the Friends of Debra fund. It is helping support me for all this extra stuff, including the hundreds of dollars of prescription co-pays, the acupuncture, therapies and yes, the massage which really helps with stress, body pain, etc.
More to come as this path continues. I feel like a Wikipedia entry full of information about ovarian cancer drugs, not to mention my opinions about them. But all of this is worth it if I can buy extra time for a life with my family and friends.
Love to you all.
"preventative" chemo cocktail of Taxol and Carboplatin was served up for six cycles. Then came Doxil (the one where preventing the weird side effects had me icing my hands and feet with icepacks three times a day and fearing stoves and toasters and hot showers). Fortunately, no side effects manifested. Not so fortunately, the Doxil did absolutely nada. But it did come with a great purple gift bag, which I still use, filled with lots of fun stuff. Then I was on Gemcitabine (Gemzar) and Gemzar with Carbo combination. It seemed to be working, the all important numbers were going down, nicely and the belly pain stopped for a while.
Then, at the last treatment of cycle six (with no real end in sight at that point), my white blood count dropped too low to treat me, so a treatment was skipped, then we were on the cruise. When I came back four weeks had passed, and those numbers had elevated a bit (gone up 8 points) but I was told no worries. Within the zone. To be expected.
At the clinic visit, I told the new fellow that I was feeling the belly pain again, and mentioned that my left hip had been hurting for over three weeks for no apparent reason. As I described in the previous blog, the path led to the CT scan and then to pulling the Gemzar/Carbo drugs and switching me to the newest in the drug arsenal: Topotecan HCL (also called Hycamtin). Topotecan sounds like an exotic tropical parrot or a native American tribe from Upstate NY.
(By the way, the hip CT was negative for cancer, I had an X-ray the other day, no results yet, but the pain seems to be subsiding since I had that fall last week...go figure!!)
So the newdrug (Google it, I did) is one that is given to women when the first and second line ovarian cancer drugs don't seem to work or stop working. It is a quick infusion treatment, lasting only half an hour after the pre-medications are administered. So I can be out of there by noon or before, if I get an early appointment, after camp drop off.
I took this on Tuesday, and other than being really sleepy (from the "relaxing" medications they drip in first) and then taking the anti-nausea drugs and steroids, I am finding myself tonight, feeling fine. Pumped a bit on the steroids, so I am awake at nearly 11 PM, which was not the case previously, but doing OK. Trying to fight the munchies that come with the steroid pop.
I am trying to be optimistic still, and hoping this one will stop or at least slow down the progression of the disease and buy more time. At the same time, I am trying to accelerate some of the things on my "to do list" of getting my affairs in order. It's just me, being pragmatic again, but with a bit more of a motivation. So getting it all together, step by step.
Sofie is getting excited about going to Camp Kesem at the end of her summer vacation. This is a free camp for kids who have a parent (or in her case, parents) with Cancer, run by volunteers from Duke, UNC and other places. It is a week of sleep away camp, her first time away from home for more than an overnight. She is a little anxious about missing us, and mostly worried that she might be teased for bringing Yang Yang, which is what her blankie is called these days. But we are all reassuring her that all the kids there have a Mom or Dad with cancer and they will be bringing their blankies or stuffies too. And the instructions from camp even said this!
I will miss her for that week, but I hope that she will be able to articulate her feelings to people who might share her worries. She and Jamie have talked about whether she thinks I might die (at this point, she says she doesn't). She just knows I get really tired and crabby some times from treatment. But today, the steroids helped me be able to push her on a special swing device at the park for a while. Sometimes I understand what Barry Bonds might have been thinking *if* he actually took performance enhancing drugs. They do make me feel more like superwoman.
So tomorrow, back to work. I have a one and a half day Central Development retreat near Pinehurst NC (where there are all sorts of famous golfing places evidently). After the retreat ends on Friday, I am heading to Asheville to see Barbara and Jacque and on Saturday --- Spa Day! It was to have been a celebration of ending chemo in June, but I am still looking forward to it so much. A whole day to relax and feel pampered.
Chemo this time will be three weeks on and one week off. It makes it seem like it is every week, pretty much. I lose track of the weeks, the months. I cannot believe July is nearly over. It seems like summer just started. My work week starts, stops and starts again, I feel like I am not accomplishing much.
In the months to come, I have to see how I feel and then make some decisions about working. If the treatments continue for a long time (as they have suggested they might), that is going to make working anywhere near full time impossible. I love the Health Sciences Library and my colleagues, but they deserve more. My boss has been tremendous all through this, but my body won't get better, and at some point, I have to decide what to do, what is best for me, for them, for the whole unpredictable situation.
Meanwhile, July brought upon it a new period of meeting my deductible and co-insurance cap before they start to pick up the costs for most of my treatment stuff. So not looking forward to the out of pocket costs, thank goodness for the generosity of so many friends who have contributed to the Friends of Debra fund. It is helping support me for all this extra stuff, including the hundreds of dollars of prescription co-pays, the acupuncture, therapies and yes, the massage which really helps with stress, body pain, etc.
More to come as this path continues. I feel like a Wikipedia entry full of information about ovarian cancer drugs, not to mention my opinions about them. But all of this is worth it if I can buy extra time for a life with my family and friends.
Love to you all.
Friday, July 20, 2007
Under The Weather
It is July, the heart of summer weather here in the southlands.
I just have to write a short comment on the weather and my relationship with it. It has been in the 90's for the past couple of days since we returned, hot, humid, you know the drill. But I find that I am doing much better this summer. I notice the little breezes and today, when it is quite muggy out, I also feel more comfortable, in my little summer skirt, than I have years before. What's up with that, really? Have I put the weather in perspective too? My Subaru is usually over 100 degrees when I get in to it from being at work (it is parked on the deck in an uncovered spot). Even so, I am surviving and thriving this year. I never thought that would be possible.
I dread the possibility of hair loss from the new chemo, but I am pretty sure I won't do much in the way (if anything) on wigs. Too hot in August. So I guess I will get used to bald again if it happens. There is a 50/50 chance (which I think is the drug company being non-committal). Anyway, I looked kind of OK before with short short hair or even bald. It is more how I feel at work. I know my colleagues will be fine, it is donors and that sort of meeting that I feel less comfortable in. I don't want the meeting to be about me and the cancer, when it should be about them and the Library.
I am also under the weather emotionally, these past few days. Since the CT. I feel overwhelmed by all sorts of little things (like laundry, making supper, piles of "stuff" and the like). I finally cried on the way to work this AM, while listening to "Seasons of Love", the song from RENT. I asked Jamie for the CD, since Sofie likes the song and knows some but not all of the words. This is a song that says so much of what I believe to be true, that it is about love. In all its varied expressions.
I need to do more crying, but not right now, I am at work and have three meetings in a row today. So I will defer the tears for a bit.
I just have to write a short comment on the weather and my relationship with it. It has been in the 90's for the past couple of days since we returned, hot, humid, you know the drill. But I find that I am doing much better this summer. I notice the little breezes and today, when it is quite muggy out, I also feel more comfortable, in my little summer skirt, than I have years before. What's up with that, really? Have I put the weather in perspective too? My Subaru is usually over 100 degrees when I get in to it from being at work (it is parked on the deck in an uncovered spot). Even so, I am surviving and thriving this year. I never thought that would be possible.
I dread the possibility of hair loss from the new chemo, but I am pretty sure I won't do much in the way (if anything) on wigs. Too hot in August. So I guess I will get used to bald again if it happens. There is a 50/50 chance (which I think is the drug company being non-committal). Anyway, I looked kind of OK before with short short hair or even bald. It is more how I feel at work. I know my colleagues will be fine, it is donors and that sort of meeting that I feel less comfortable in. I don't want the meeting to be about me and the cancer, when it should be about them and the Library.
I am also under the weather emotionally, these past few days. Since the CT. I feel overwhelmed by all sorts of little things (like laundry, making supper, piles of "stuff" and the like). I finally cried on the way to work this AM, while listening to "Seasons of Love", the song from RENT. I asked Jamie for the CD, since Sofie likes the song and knows some but not all of the words. This is a song that says so much of what I believe to be true, that it is about love. In all its varied expressions.
I need to do more crying, but not right now, I am at work and have three meetings in a row today. So I will defer the tears for a bit.
Wednesday, July 18, 2007
Funny Cruise Moments
It is going to be hard to summarize all the great moments (and the just wonderful normal moments) on the cruise, but let me provide a few bullet points for your amusement!
Several days into the cruise, Sofie was standing on the big bed, naked, facing the mirrored wall. She had played in the sun, carefully coated with number 50 sunscreen, for a few days now. "Mom" she said excitedly. "Which one?" we asked. "Both of you". "Mom, I have a picture of my bathing suit on my body". Her tan was pretty impressive. And all four of her bathing suits were exactly the same style, different colors, so the imprint was clearly of that style!
Another day, as I was laying out my clothing, I picked up my underwear to put it on. "Mom, those are some pretty big panties" she said. Kids, you gotta love that honesty. She sometimes forgets that the whole world doesn't know all about her. When Sher, a new friend (friend of Ellen LaPointe's who I met on the cruise with her daughter Max), asked Sofie what she wanted her to bring from the buffet for her lunch, Sofie responded "what I like" as if everyone should simply know that. By my count, she ate hot dogs every day for the entire week from the Kids Cafe. And she ate huge piles of bacon and sausages for breakfast.
Personally, my favorite Sofie tale is when we were walking to the kids pool. We saw another mom, looking a bit harried, who was pushing one kid in a stroller and chasing after her five year old son. She kept calling his name and asking him to stop running. He acted like he had not heard her (sound familiar, parents?). She finally yelled at him and did the counting thing: One, two....he stopped. Sofie took it upon herself to go over to the mom and tell her "My mom yells and does that counting thing too, and I don't like it". Great Sofie, out me as a yelling mom to a stranger. The other mom and I exchanged knowing looks.
The cruise food was irregular. The buffet offered countless options, most of which did not really appeal to me. Too many cooked hot food for lunch with sauces.
Dinners, however, were another story, three of the evenings, we had dinner at Aqua, offering a five course menu (the last course was cheese, which we never had any real interest or room for).
We had a great wait staff team and on our last night there, we gave them a big tip for treating us so well. From our very first meal there, when Sofie consumed three portions of beef wellington to the last when she ate two sirloin steaks, the food and the service were wonderful. The other speciality restaurants were more disappointing: the Tepanyaki place (like Benihana) was hard to get a reservation for, we finally did and then our guy seemed to be a trainee, and didn't do the fancy knife throwing around stuff like his partner (who faced the other table). The food was OK, and not too expensive (extra cover charge of $20 pp), but not really all that.
The Italian place was not a cover charge, which was good, since the food was mediocre and the service erratic. The Sushi place was better, Sofie asked for sushi one night and I took her, there was a $15 dollar cover but they did not charge for her. She ate more than I did, as that night we had other plans for dinner.
The shows, as I mentioned before, were great. The last night we saw Andrea McArdle and other r families crew and staff sing Annie. Someone kind of narrated, and the choral version was a 45 minute great show. We were up in the balcony with Laurie and I ended up sitting next to Andrea's husband Ed with wiggly Sofie on my lap. He was great about it and Sofie seemed to like the singing. I thought I had seen the show when I was about 15, but then I did the math, the show opened in the late 70's and I was hardly a teenager. Memories of youth are fading.
Since I said these would be funny moments, I will close with just one great image, that of my daughter swimming in the general pool or hot tubs, in her snorkel mask and tube. I would read and look up every so often to scan the horizon. That snorkel gear helped me locate her every time! Sofie enjoyed the free ice cream cones that were available by the pool on a daily basis, as did we all.
I miss that cruise already. Today I had to get a salmon bagel with capers and onion, tomatoes and cream cheese, like the daily breakfast I had for the whole week.
Oh, and because it was a gay cruise, don't you know that on the costume nights, the boys especially went all out for themselves and their kids.....great and creative costumes from their regions (the winners were the Brooklyn bridge, I think). And we just had cute t shirts. Next time!!!
Several days into the cruise, Sofie was standing on the big bed, naked, facing the mirrored wall. She had played in the sun, carefully coated with number 50 sunscreen, for a few days now. "Mom" she said excitedly. "Which one?" we asked. "Both of you". "Mom, I have a picture of my bathing suit on my body". Her tan was pretty impressive. And all four of her bathing suits were exactly the same style, different colors, so the imprint was clearly of that style!
Another day, as I was laying out my clothing, I picked up my underwear to put it on. "Mom, those are some pretty big panties" she said. Kids, you gotta love that honesty. She sometimes forgets that the whole world doesn't know all about her. When Sher, a new friend (friend of Ellen LaPointe's who I met on the cruise with her daughter Max), asked Sofie what she wanted her to bring from the buffet for her lunch, Sofie responded "what I like" as if everyone should simply know that. By my count, she ate hot dogs every day for the entire week from the Kids Cafe. And she ate huge piles of bacon and sausages for breakfast.
Personally, my favorite Sofie tale is when we were walking to the kids pool. We saw another mom, looking a bit harried, who was pushing one kid in a stroller and chasing after her five year old son. She kept calling his name and asking him to stop running. He acted like he had not heard her (sound familiar, parents?). She finally yelled at him and did the counting thing: One, two....he stopped. Sofie took it upon herself to go over to the mom and tell her "My mom yells and does that counting thing too, and I don't like it". Great Sofie, out me as a yelling mom to a stranger. The other mom and I exchanged knowing looks.
The cruise food was irregular. The buffet offered countless options, most of which did not really appeal to me. Too many cooked hot food for lunch with sauces.
Dinners, however, were another story, three of the evenings, we had dinner at Aqua, offering a five course menu (the last course was cheese, which we never had any real interest or room for).
We had a great wait staff team and on our last night there, we gave them a big tip for treating us so well. From our very first meal there, when Sofie consumed three portions of beef wellington to the last when she ate two sirloin steaks, the food and the service were wonderful. The other speciality restaurants were more disappointing: the Tepanyaki place (like Benihana) was hard to get a reservation for, we finally did and then our guy seemed to be a trainee, and didn't do the fancy knife throwing around stuff like his partner (who faced the other table). The food was OK, and not too expensive (extra cover charge of $20 pp), but not really all that.
The Italian place was not a cover charge, which was good, since the food was mediocre and the service erratic. The Sushi place was better, Sofie asked for sushi one night and I took her, there was a $15 dollar cover but they did not charge for her. She ate more than I did, as that night we had other plans for dinner.
The shows, as I mentioned before, were great. The last night we saw Andrea McArdle and other r families crew and staff sing Annie. Someone kind of narrated, and the choral version was a 45 minute great show. We were up in the balcony with Laurie and I ended up sitting next to Andrea's husband Ed with wiggly Sofie on my lap. He was great about it and Sofie seemed to like the singing. I thought I had seen the show when I was about 15, but then I did the math, the show opened in the late 70's and I was hardly a teenager. Memories of youth are fading.
Since I said these would be funny moments, I will close with just one great image, that of my daughter swimming in the general pool or hot tubs, in her snorkel mask and tube. I would read and look up every so often to scan the horizon. That snorkel gear helped me locate her every time! Sofie enjoyed the free ice cream cones that were available by the pool on a daily basis, as did we all.
I miss that cruise already. Today I had to get a salmon bagel with capers and onion, tomatoes and cream cheese, like the daily breakfast I had for the whole week.
Oh, and because it was a gay cruise, don't you know that on the costume nights, the boys especially went all out for themselves and their kids.....great and creative costumes from their regions (the winners were the Brooklyn bridge, I think). And we just had cute t shirts. Next time!!!
Cancer Sucks
I just heard back from Teri, who kind of read me the radiology report from last night's CT scan. The "good news" is that it (the cancer) doesn't appear to be in the left hip, so not the cause of the pain I have been having. Meaning it is not in the bones. Which of course, is very good news.
The less good news but the news I kind of suspected for the past month or so is that the tumor is growing on the liver, there appears to be one more (teeny) lesion there and there is more "activity" in the peritoneal cavity.
They are going to likely put me on another (this is the fourth) kind of chemo, one called Topotecan or Hycamtin, if you desire to Google it. It is for those of us in the unique place of having failed original and secondary treatment options. Yep, that is me, someone for whom failure is not a pretty or acceptable word, failing all over the place. It was daunting to read the link. Anyway, it clearly states that the goal of treatment is not remission (or cure, that went out the window a while ago), but rather to slow progression of the disease. Slow it a lot, I hope, I have a seven year plan and this is only year one of that.
The other day, I was trying to recall all five stages of Kubler-Ross stages of death and dying. I got to four and could not conjure up the fifth one (but I Googled that today). It is especially odd for me, as I did my graduate work on that topic! But that was centuries ago. I haven't cried yet, I want to but the tears won't come. I am more annoyed. But this set of feelings also makes me want to purge out stuff again, so perhaps I can make a slight dent in the mess in my office. Who knows?
I am torn about going to work, my brain is just not with me, but I will try this tomorrow, I guess. For half a day perhaps? I just don't know. I feel like I am pretty checked out of other things in the world right now. I want to see movies that make me laugh (but recent Netflix choices are Letters from Iwo Jima and Flags of Our Fathers, not exactly hysterically funny stuff). Perhaps I should sneak out on opening day and go see Hairspray. Yeah, that might be exactly the ticket . I think it opens tomorrow or Friday.
Sofie will be ready for pick up in less than one hour, so I have to sign off now. I am now rescheduled for chemo the next three weeks (this new one is three on and one off, three on and one off). The side effects "might" include all the usual suspects plus thinning or loss of hair. Now the dilemma, do I cancel my haircut appointment for next week if I am about to lose my hair anyway? Doesn't seem pragmatic to spend $50.00 on haircut for no reason! Probably I will. But will wait a day for that!
Yep, cancer does suck. Just when I am in a rhythm about treatments, as I was in recently, all hell breaks loose. And once again, the cancer is in charge and I am just an audience member.
The less good news but the news I kind of suspected for the past month or so is that the tumor is growing on the liver, there appears to be one more (teeny) lesion there and there is more "activity" in the peritoneal cavity.
They are going to likely put me on another (this is the fourth) kind of chemo, one called Topotecan or Hycamtin, if you desire to Google it. It is for those of us in the unique place of having failed original and secondary treatment options. Yep, that is me, someone for whom failure is not a pretty or acceptable word, failing all over the place. It was daunting to read the link. Anyway, it clearly states that the goal of treatment is not remission (or cure, that went out the window a while ago), but rather to slow progression of the disease. Slow it a lot, I hope, I have a seven year plan and this is only year one of that.
The other day, I was trying to recall all five stages of Kubler-Ross stages of death and dying. I got to four and could not conjure up the fifth one (but I Googled that today). It is especially odd for me, as I did my graduate work on that topic! But that was centuries ago. I haven't cried yet, I want to but the tears won't come. I am more annoyed. But this set of feelings also makes me want to purge out stuff again, so perhaps I can make a slight dent in the mess in my office. Who knows?
I am torn about going to work, my brain is just not with me, but I will try this tomorrow, I guess. For half a day perhaps? I just don't know. I feel like I am pretty checked out of other things in the world right now. I want to see movies that make me laugh (but recent Netflix choices are Letters from Iwo Jima and Flags of Our Fathers, not exactly hysterically funny stuff). Perhaps I should sneak out on opening day and go see Hairspray. Yeah, that might be exactly the ticket . I think it opens tomorrow or Friday.
Sofie will be ready for pick up in less than one hour, so I have to sign off now. I am now rescheduled for chemo the next three weeks (this new one is three on and one off, three on and one off). The side effects "might" include all the usual suspects plus thinning or loss of hair. Now the dilemma, do I cancel my haircut appointment for next week if I am about to lose my hair anyway? Doesn't seem pragmatic to spend $50.00 on haircut for no reason! Probably I will. But will wait a day for that!
Yep, cancer does suck. Just when I am in a rhythm about treatments, as I was in recently, all hell breaks loose. And once again, the cancer is in charge and I am just an audience member.
Tuesday, July 17, 2007
Family Pride
I forgot to write this, but Jamie was asked to do a "guest blogger" piece on the Family Pride website (their Director Jennifer and much of their staff was on the cruise and did several workshops).
I also wrote a response, below. But better for you all to visit the Family Pride blog and read it yourself.
++++++++++++++++++++++++++++++++++++++++++
I am so proud of this blog piece.
I am the “other cancer mom”. I wanted to add a few things from my perspective. Other than our door which announced to any and all (on the ninth deck, at any rate), our status as women with cancer, I made a decision on this cruise to be “cancer free”, meaning not to bring it up with anyone who did not already know. That was a wonderful break from what has been over a year and a half of having cancer kind of take over my (our) lives.
I also want to congratulate Jennifer and Family Pride for the workshops and for their work in general. I just finished reading the lead article in last Sunday’s NY Times Magazine on donor eggs and the ethical issues that are prompted by this type of decision. After reading it, I just might write my first ever letter to the editor. What it comes down to, really, is that Love Makes a Family….and the other issues, to tell or not to tell, really surprised me. Our community has been dealing with all sorts of reproductive issues for decades. We get to deal with the meaty stuff, the “who is the mother” part in areas that simply reject second parent adoption or with people who won’t accept it. How can someone even consider that concealing the truth might be “better” for their child? Oh, and did I mention that most or all of the people in the article are heterosexual, so they don’t have to deal with what the legal system in our country thinks about their family. They assume, and rightly so, that the child they bear with donor eggs will have all the legal rights of any other child. Of course they do.
Telling the truth about our lives, being out and public and pro-active and assertive with schools, camps, doctors, therapists, just about everyone, is, in my opinion, the only way to make our lives real. I would never consider lying to our daughter about her origins. She is adopted from Eastern Europe and has known this since she was not quite three. You answer questions with honestly and make the answers age appropriate.
She tends to be kind of invisible as an adoptee, since she is not part of a transracial adoption. As an older mom, I am sometimes (all too often!) asked if she is my grandchild. She doesn’t look anything like me, if anything, she more resembles Jamie. But the important thing is that she knows her story. And that she has two moms. She knows that you don’t have to look like your parent(s) to be part of a family. The first week I moved to North Carolina, while opening my bank account, she “outed” me to the bank teller by simply stating “I have two moms…and a bug bite”. She tells everyone that she has two moms. I dread the day someone tells her that having two moms is bad.
Our children are loved beyond measure. On the cruise, I was moved sometimes to tears, just watching gay dads with their babies. I guess I am kind of used to the moms, but seeing so many dads was joyful. I want Sofie to grow up in a world that celebrates family and love. Family Pride will help us get there.
I also wrote a response, below. But better for you all to visit the Family Pride blog and read it yourself.
++++++++++++++++++++++++++++++++++++++++++
I am so proud of this blog piece.
I am the “other cancer mom”. I wanted to add a few things from my perspective. Other than our door which announced to any and all (on the ninth deck, at any rate), our status as women with cancer, I made a decision on this cruise to be “cancer free”, meaning not to bring it up with anyone who did not already know. That was a wonderful break from what has been over a year and a half of having cancer kind of take over my (our) lives.
I also want to congratulate Jennifer and Family Pride for the workshops and for their work in general. I just finished reading the lead article in last Sunday’s NY Times Magazine on donor eggs and the ethical issues that are prompted by this type of decision. After reading it, I just might write my first ever letter to the editor. What it comes down to, really, is that Love Makes a Family….and the other issues, to tell or not to tell, really surprised me. Our community has been dealing with all sorts of reproductive issues for decades. We get to deal with the meaty stuff, the “who is the mother” part in areas that simply reject second parent adoption or with people who won’t accept it. How can someone even consider that concealing the truth might be “better” for their child? Oh, and did I mention that most or all of the people in the article are heterosexual, so they don’t have to deal with what the legal system in our country thinks about their family. They assume, and rightly so, that the child they bear with donor eggs will have all the legal rights of any other child. Of course they do.
Telling the truth about our lives, being out and public and pro-active and assertive with schools, camps, doctors, therapists, just about everyone, is, in my opinion, the only way to make our lives real. I would never consider lying to our daughter about her origins. She is adopted from Eastern Europe and has known this since she was not quite three. You answer questions with honestly and make the answers age appropriate.
She tends to be kind of invisible as an adoptee, since she is not part of a transracial adoption. As an older mom, I am sometimes (all too often!) asked if she is my grandchild. She doesn’t look anything like me, if anything, she more resembles Jamie. But the important thing is that she knows her story. And that she has two moms. She knows that you don’t have to look like your parent(s) to be part of a family. The first week I moved to North Carolina, while opening my bank account, she “outed” me to the bank teller by simply stating “I have two moms…and a bug bite”. She tells everyone that she has two moms. I dread the day someone tells her that having two moms is bad.
Our children are loved beyond measure. On the cruise, I was moved sometimes to tears, just watching gay dads with their babies. I guess I am kind of used to the moms, but seeing so many dads was joyful. I want Sofie to grow up in a world that celebrates family and love. Family Pride will help us get there.
Not Knowing
So after the bliss of several treatment free weeks, and a vacation, I feel physically pretty great. The only problem has been this persistent pain in my left hip area, for about three or so weeks. At first I thought it was from sleeping "funny" or perhaps from the massage I had before I left for vacation, but it would not improve. It made going up and down stairs on the ship hard to do. Fortunately there were elevators, but going one floor up or down made me feel weird.
Today I went to the Oncology Clinic and was scheduled for chemo, as per usual. I had gotten my bloodwork results yesterday, the CA-125 was up 8 points, but that was nothing to worry about they said, I had been off treatment for nearly a month, due to the low white count last time and the trip.
I mentioned to the new fellow (a very young looking woman, Dr. Jewelle) that I had this hip pain. She stepped out of the room after her exam of me and was gone a long time, talking to the other doctors (my doc was out of town, but Dr. Secord was there for this appointment). I was reading and she popped her head in to let me know they would be back soon.
After another 15 minutes or so, I started to worry a bit. And just like that, the whole team arrived. They were concerned too, and had already cancelled the treatment. I have a CT scan this evening to see if the lesion (which feels larger to my touch and theirs) is truly growing and to see if there is anything in the hip area.
It is not like my brain has not already gone there, is the cancer in the bone now? Is is not working even if the numbers have been going down nicely.
I have to wait and the waiting is so hard. I don't know what the next steps will be. They discussed new chemo regimens, etc. Oh joy, another, which will be the fourth for me. I have to get used to all new side effects yet again. But bottom line, I am not ready to give in or give up to this. I don't know why it seems to be taking the direction it is, but I am not ready!!!
I want to scream this from a mountaintop. I have sort of been working with a seven year perspective, enough time to get Sofie through primary school, into middle school, etc. So I will await the results of all of this and pray that they can "manage" this too. My body does not seem to be cooperating very well.
We will be going to supper at Whole Foods this pm, I am not in the mood to cook. Or eat for that matter. But Sofie will be starving, she started Camp Riverlea yesterday, this is the camp that she loved last year and the one that makes her sooooo tired.
I will post more, as soon as I know more. Keep me in your thoughts.
Today I went to the Oncology Clinic and was scheduled for chemo, as per usual. I had gotten my bloodwork results yesterday, the CA-125 was up 8 points, but that was nothing to worry about they said, I had been off treatment for nearly a month, due to the low white count last time and the trip.
I mentioned to the new fellow (a very young looking woman, Dr. Jewelle) that I had this hip pain. She stepped out of the room after her exam of me and was gone a long time, talking to the other doctors (my doc was out of town, but Dr. Secord was there for this appointment). I was reading and she popped her head in to let me know they would be back soon.
After another 15 minutes or so, I started to worry a bit. And just like that, the whole team arrived. They were concerned too, and had already cancelled the treatment. I have a CT scan this evening to see if the lesion (which feels larger to my touch and theirs) is truly growing and to see if there is anything in the hip area.
It is not like my brain has not already gone there, is the cancer in the bone now? Is is not working even if the numbers have been going down nicely.
I have to wait and the waiting is so hard. I don't know what the next steps will be. They discussed new chemo regimens, etc. Oh joy, another, which will be the fourth for me. I have to get used to all new side effects yet again. But bottom line, I am not ready to give in or give up to this. I don't know why it seems to be taking the direction it is, but I am not ready!!!
I want to scream this from a mountaintop. I have sort of been working with a seven year perspective, enough time to get Sofie through primary school, into middle school, etc. So I will await the results of all of this and pray that they can "manage" this too. My body does not seem to be cooperating very well.
We will be going to supper at Whole Foods this pm, I am not in the mood to cook. Or eat for that matter. But Sofie will be starving, she started Camp Riverlea yesterday, this is the camp that she loved last year and the one that makes her sooooo tired.
I will post more, as soon as I know more. Keep me in your thoughts.
Wednesday, July 11, 2007
The Blog from the Boat
This is the first day I have visited the Internet Cafe here on the Norwegian Dawn. Which says a lot, since our cabin is on the same corridor as the cafe! It has truly been a relaxing time so far, from a lovely first evening of Broadway show music to tonight, when we plus Laurie and Maya (friends from CA) went to have dinner together, Teppanyaki style (like Benihana). There is a big party tonight on the private island, but we have heard the rumors about the bugs at night, so we are declining. Sofie and Jamie are on board, "exploring" parts of the ship. We spent the whole day with her today, no Kids Crew (her request) and she swam, swam, swam for several hours earlier, then lunch and then we took a family nap. It has been like that, doing things that make us happy, but not going crazy.
We disembarked at Key West yesterday, it was HOT and humid and full of tourista stuff. I remembered my first Olivia cruise, where I loved riding around on bikes, but that was in February or March and I had forgotten that part. The weather was so hot that we ran in and out of tacky souvenir stores just to cool off. Had a key lime slushie and a key lime cupcake (theme developing here) and Sofie picked out a very lovely snow globe to bring home. And then we got back on the ship.
One of the best features for kids here is the Kids Cafe, where they serve themselves and also can sit at the little tables (with or without parents). My knees tried it one time, but that was it, I could barely get off the stool!
This is truly the way life should be in terms of families. There are lots of gay dads with babies, many kids of color with Caucasian parents, and all sorts of assorted aunts, uncles, grandparents and more. All with a Broadway flair thanks to Rosie's passion for all things Broadway.
Sofie has been quite assertive about what she wants to do, gets outvoted occasionally when we want to see an evening show or go to a workshop. She told Jamie that the world was "this much" (arms opened wide) about her and "this much" (fingers showing about an inch of space) about us. Uh huh.
We are at sea for a few days and then this magical time will end, all too soon. I have another book to read and more tan to work on. I have spent the time here hardly thinking about cancer at all, I don't talk about it to folks although our very fabulous decorated door, thanks to Jamie's creativity, has been viewed by many. But I had decided to be mostly "cancer free" in my time here and that has been great.
OK, I will post more completely when we are home. Meanwhile, hugs to all, especially to Ellen and I will share more of the silly, fun stuff later.
We disembarked at Key West yesterday, it was HOT and humid and full of tourista stuff. I remembered my first Olivia cruise, where I loved riding around on bikes, but that was in February or March and I had forgotten that part. The weather was so hot that we ran in and out of tacky souvenir stores just to cool off. Had a key lime slushie and a key lime cupcake (theme developing here) and Sofie picked out a very lovely snow globe to bring home. And then we got back on the ship.
One of the best features for kids here is the Kids Cafe, where they serve themselves and also can sit at the little tables (with or without parents). My knees tried it one time, but that was it, I could barely get off the stool!
This is truly the way life should be in terms of families. There are lots of gay dads with babies, many kids of color with Caucasian parents, and all sorts of assorted aunts, uncles, grandparents and more. All with a Broadway flair thanks to Rosie's passion for all things Broadway.
Sofie has been quite assertive about what she wants to do, gets outvoted occasionally when we want to see an evening show or go to a workshop. She told Jamie that the world was "this much" (arms opened wide) about her and "this much" (fingers showing about an inch of space) about us. Uh huh.
We are at sea for a few days and then this magical time will end, all too soon. I have another book to read and more tan to work on. I have spent the time here hardly thinking about cancer at all, I don't talk about it to folks although our very fabulous decorated door, thanks to Jamie's creativity, has been viewed by many. But I had decided to be mostly "cancer free" in my time here and that has been great.
OK, I will post more completely when we are home. Meanwhile, hugs to all, especially to Ellen and I will share more of the silly, fun stuff later.
Saturday, July 07, 2007
Lucky Sevens!
Today is 07/07/07 and today we all got on the boat. It was a bit chaotic but also similar to lines at Disney, long ones. Our luggage was left with the red tags on it, and will be delivered later. Sofie's swimsuit is packed in the carry on bag...she is determined to jump in and swim right away, we have been telling her for weeks about the kid's pool and the water slides! We are a bit overwhelmed I think, by how big the ship is, but it is beautiful and we have a great room. We have a little balcony, overlooking the port right now, but soon, we will see ocean and maybe dolphins! Space is small and efficient, but there is plenty of room in the closet and dresser drawers (all three of them) for our stuff. I hope I have not brought too much. Laurie and Maya are right across the hall, they don't have windows or even portholes, so Laurie asked for visitors rights to our balcony. Of course, it looks perfect for reading and relaxing. This evening is the first show, a Broadway revue type thing. I love that stuff, I cut my theater teeth on Broadway shows as a kid, so I am ready and excited about it. Rosie will host. I have no idea at this point how visible she will be on the cruise, in the HBO documentary "All Aboard!" she seemed to be out and about a lot. I will try to keep notes on this fabulous vacation as it unfolds. Jamie has brought great stuff to decorate our door, so our lives will be an open book for the room stewards and everyone on the ninth level. The staff here are so nice, and they not only make up the room, they have nightly turndown service. Ah, vacation.
Friday, July 06, 2007
Truly, Really on Vacation
We are in NYC, at the Manhattan Club, right across the street from Carnegie Hall! I still feel like an educated tourist, but I am liking it here much more than I recall from summers as a high schooler coming into Manhattan.
We are spending two nights here before boarding the Norwegian Dawn, our cruise ship!!! We are beyond excited, Sofie is too.
Sofie and Jamie went to the Central Park zoo today, to see penguins Roy, Silo and Tango from her book, Tango Makes Three. And I took a lovely tour of this facility. I would love to come to NYC more, now that I live on the East Coast. Perhaps I will do that, in the future.
We are chillin' right now, and then I am taking Sofie to Times Square to the giant Toys R Us, and then....to see her first ever Broadway play, Mary Poppins. We got two free tickets, Jamie is visiting her friend Bec tonight, so we are taking this little risk and going. Worst case, we leave before the show is over if she is exhausted or tired. But I hope she will love it as I loved going to theaters when I was a kid. I want to share the experiences I loved with her.
Sofie is still a challenge to travel with. Her restaurant manners are still terrible, as evidenced by lunch today...at Veslelka, the Ukrainian place on the lower east side. We actually had a great meal, very authentic, and she loved the beef stroganoff. But her wiggling got to me somewhere along the meal. Jamie and I shared our food, perogi's of all sorts and soup (cold borscht for me, yum) and a small blintz with raspberries for dessert. We were stuffed and happy. No dinner will be needed tonight!
We even had a celebrity sighting: Chole Sevingny from "Big Love". By the end of the meal we were sure it was her, although she looked younger and more "ordinary" than on TV of course.
OK, it is time to get out the door, so this is it for today. Will keep up the blog during the cruise and post after we return to land.
We are spending two nights here before boarding the Norwegian Dawn, our cruise ship!!! We are beyond excited, Sofie is too.
Sofie and Jamie went to the Central Park zoo today, to see penguins Roy, Silo and Tango from her book, Tango Makes Three. And I took a lovely tour of this facility. I would love to come to NYC more, now that I live on the East Coast. Perhaps I will do that, in the future.
We are chillin' right now, and then I am taking Sofie to Times Square to the giant Toys R Us, and then....to see her first ever Broadway play, Mary Poppins. We got two free tickets, Jamie is visiting her friend Bec tonight, so we are taking this little risk and going. Worst case, we leave before the show is over if she is exhausted or tired. But I hope she will love it as I loved going to theaters when I was a kid. I want to share the experiences I loved with her.
Sofie is still a challenge to travel with. Her restaurant manners are still terrible, as evidenced by lunch today...at Veslelka, the Ukrainian place on the lower east side. We actually had a great meal, very authentic, and she loved the beef stroganoff. But her wiggling got to me somewhere along the meal. Jamie and I shared our food, perogi's of all sorts and soup (cold borscht for me, yum) and a small blintz with raspberries for dessert. We were stuffed and happy. No dinner will be needed tonight!
We even had a celebrity sighting: Chole Sevingny from "Big Love". By the end of the meal we were sure it was her, although she looked younger and more "ordinary" than on TV of course.
OK, it is time to get out the door, so this is it for today. Will keep up the blog during the cruise and post after we return to land.
Wednesday, July 04, 2007
How I Celebrated the 4th of July
Last minute packing! Actually, the re-arranging of things, one switch of shoes, one more look for my beach/water shoes (to no avail, where the heck are they?) and a lovely BBQ lunch outside with Deb, our current house guest.
Sofie has made her toy choices, I had to set some limits on the stuffed toys she wanted. But she has some that she loves (snakes (2 ), foxes (2) and a tiger (1). Also art stuff, a box of UNO cards and of course, blankie. Unwashed and disgusting as usual, the way she likes it.
Doubtful we will need lots of toys, I am sneaking in some of her reading practice books and one chapter book for us to read to her. We should have plenty of fun stuff to do, plus swimming to keep her happy and contented.
We might go to FAO Schwartz in NYC, if we dare. Or the giant Toys R Us, but mostly we plan to be mellow, eat NYC foods (pizza, real bagels and of course, Ukrainian, doesn't everyone eat that?). And we are excitedly looking forward to Saturday at noon, when we can board "our ship" and begin this cruise we have talked about for months.
I feel positively blessed today, a perfect day, not too hot, slight breeze, a wonderful friend visiting and I am packed. Well, mostly.
Bon Voyage to us. We hope to take lots of photos and write in our blogs (but will publish them when we are back, since it is expensive to access the Internet on board). If we dock and happen to see a Starbucks, well, then maybe. If the wireless is free!
Yay, we are so excited. Can you tell?
Sofie has made her toy choices, I had to set some limits on the stuffed toys she wanted. But she has some that she loves (snakes (2 ), foxes (2) and a tiger (1). Also art stuff, a box of UNO cards and of course, blankie. Unwashed and disgusting as usual, the way she likes it.
Doubtful we will need lots of toys, I am sneaking in some of her reading practice books and one chapter book for us to read to her. We should have plenty of fun stuff to do, plus swimming to keep her happy and contented.
We might go to FAO Schwartz in NYC, if we dare. Or the giant Toys R Us, but mostly we plan to be mellow, eat NYC foods (pizza, real bagels and of course, Ukrainian, doesn't everyone eat that?). And we are excitedly looking forward to Saturday at noon, when we can board "our ship" and begin this cruise we have talked about for months.
I feel positively blessed today, a perfect day, not too hot, slight breeze, a wonderful friend visiting and I am packed. Well, mostly.
Bon Voyage to us. We hope to take lots of photos and write in our blogs (but will publish them when we are back, since it is expensive to access the Internet on board). If we dock and happen to see a Starbucks, well, then maybe. If the wireless is free!
Yay, we are so excited. Can you tell?
Saturday, June 30, 2007
Help for the Packing Challenged
Today is my day to pack for the trip, Jamie is with Sofie all day. It should take less than two hours, right? It is one week, casual, and I am trying not to overpack. I have had a list for nearly a month now. But I can feel items sneaking on to the list....the cool Frameline T-shirt Alan just sent to me. The "extra" pair of slides that look nice with black pants. I am going to lay all the stuff out on the bed, and really try hard NOT to overpack. I need a 12-step group, but too late for this trip.
Last night, since Jamie had Sofie then too, I went out to Squids (my favorite after Friday work day place) with Betty Prioux and although their claim to fame (especially at happy hour on Fridays) is a peck of raw oysters, we sat at the regular tables and shared an amazing dinner of calamari followed by lobster. It has been at least ten years since I have eaten a lobster. Since that time, they have gone way up in price, but I still loved the taste. And half was plenty, it is filling. Then, since it was only a bit before 7 when we finished, we decided to see Evening, which had just opened. I heard the reviewers were so so, but the cast alone was worth seeing. I rarely let a reviewer, especially a male who reviews a "women's film", guide my choices.
The 7:30 show was totally sold out, the first time this has happened to me in this area. So we took a deep breath and got tickets to the 10 PM show, and sat at Starbucks for a long time, chatting and drinking coffee to help us stay awake. We left the theater at about 12:20 AM. The film was exquisite. That is about the best one word I can come up with. Not perfect, but lovely both visually and for the performances. I am always amazed at actors who are British or Australian who speak with American accents.
OK, no more procrastination, it is upstairs for me, to do the packing. Wish me luck.
Last night, since Jamie had Sofie then too, I went out to Squids (my favorite after Friday work day place) with Betty Prioux and although their claim to fame (especially at happy hour on Fridays) is a peck of raw oysters, we sat at the regular tables and shared an amazing dinner of calamari followed by lobster. It has been at least ten years since I have eaten a lobster. Since that time, they have gone way up in price, but I still loved the taste. And half was plenty, it is filling. Then, since it was only a bit before 7 when we finished, we decided to see Evening, which had just opened. I heard the reviewers were so so, but the cast alone was worth seeing. I rarely let a reviewer, especially a male who reviews a "women's film", guide my choices.
The 7:30 show was totally sold out, the first time this has happened to me in this area. So we took a deep breath and got tickets to the 10 PM show, and sat at Starbucks for a long time, chatting and drinking coffee to help us stay awake. We left the theater at about 12:20 AM. The film was exquisite. That is about the best one word I can come up with. Not perfect, but lovely both visually and for the performances. I am always amazed at actors who are British or Australian who speak with American accents.
OK, no more procrastination, it is upstairs for me, to do the packing. Wish me luck.
Friday, June 29, 2007
Pesky Little White Blood Count
So, we are in pre-vacation mode, with packing lists galore, and trying to make sure we don't forget anything, yet still pack light. This past week was supposed to be chemo number 12 of the six cycle, two treatments per cycle regimen.
So Monday I feel totally punk. I get to the lab and have the blood drawn, leaving the port accessed for Tuesday's chemotherapy. We have a nice system, so I don't have to be stuck twice. Anyway, the new person sticks me and the blood doesn't flow back into the syringe. Never happened before, but she is training (Duke is a teaching hospital, so you just know this stuff happens). After a couple of exercise like moves (right hand up in the air, head turned to the left, cough, etc), the blood flows out and all is well. I am lightheaded by now.
I get to the parking deck and kind of sit there, wondering whether or not to go to Chapel Hill or back home. I finally call work and say I am not coming in. I get home and immediately crash into a deep sleep, which only the phone ringing an hour or so later can wake me.
I felt kind of punk all day, just tired, queasy and out of sorts.....then I got "the call" from Teri. White counts too low to treat me on Tuesday!! Did that stop me from getting my nails done the next day? Of course not.
On Wednesday I had yet another clinic appointment, at the coagulation clinic this time. Lots of hurry up and wait, but I was there for a full check up and discussion of the blood levels. Suffice to say I am on that injectable stuff for a while more, we might move to the pills (first to see how they work, which means frequent blood draws again while they are regulating me).
Thursday and Friday (today) I have been at work. The good things about the missed chemo are less nausea and more time to feel better *before* getting on the ship!!! And the chemo I have had has left me with little hair to shave pre-cruise on my legs or arms. A nice bonus, that.
Packing light. Packing light. My mantra. Tomorrow, we will see how it works (or if it does!!!). So excited about this vacation. Cannot wait to take off for NYC, where we will go see the gay penguins in the Central Park Zoo and eat Ukranian food (two examples of our plans) while pacing ourselves, not too much to do since we are on vacation, not "real life".
I procrastinated until the last possible moment then went ahead and ordered a beach cover-up. That is what they call them, but more like a tent for my body. But the bathing suit in public issue looms only a week away and I chickened out from just wearing it with shorts to the pool. I want cover!!!
Sofie is getting quite excited as well, and is doing a lot of drawing at her camp. Snakes mostly. We are so not surprised. She likes camp.
When we get home, we have to move quickly into gear to get her 7th birthday party going on, a pool party at the condo. Rain date and all (it is that time of the year).
Personally, I love those summer storms. They soak the garden so I don't have to, and make life easier of course, eliminating a watering or two. And they are heavy enough sometimes to rinse off the dusty car.
So Monday I feel totally punk. I get to the lab and have the blood drawn, leaving the port accessed for Tuesday's chemotherapy. We have a nice system, so I don't have to be stuck twice. Anyway, the new person sticks me and the blood doesn't flow back into the syringe. Never happened before, but she is training (Duke is a teaching hospital, so you just know this stuff happens). After a couple of exercise like moves (right hand up in the air, head turned to the left, cough, etc), the blood flows out and all is well. I am lightheaded by now.
I get to the parking deck and kind of sit there, wondering whether or not to go to Chapel Hill or back home. I finally call work and say I am not coming in. I get home and immediately crash into a deep sleep, which only the phone ringing an hour or so later can wake me.
I felt kind of punk all day, just tired, queasy and out of sorts.....then I got "the call" from Teri. White counts too low to treat me on Tuesday!! Did that stop me from getting my nails done the next day? Of course not.
On Wednesday I had yet another clinic appointment, at the coagulation clinic this time. Lots of hurry up and wait, but I was there for a full check up and discussion of the blood levels. Suffice to say I am on that injectable stuff for a while more, we might move to the pills (first to see how they work, which means frequent blood draws again while they are regulating me).
Thursday and Friday (today) I have been at work. The good things about the missed chemo are less nausea and more time to feel better *before* getting on the ship!!! And the chemo I have had has left me with little hair to shave pre-cruise on my legs or arms. A nice bonus, that.
Packing light. Packing light. My mantra. Tomorrow, we will see how it works (or if it does!!!). So excited about this vacation. Cannot wait to take off for NYC, where we will go see the gay penguins in the Central Park Zoo and eat Ukranian food (two examples of our plans) while pacing ourselves, not too much to do since we are on vacation, not "real life".
I procrastinated until the last possible moment then went ahead and ordered a beach cover-up. That is what they call them, but more like a tent for my body. But the bathing suit in public issue looms only a week away and I chickened out from just wearing it with shorts to the pool. I want cover!!!
Sofie is getting quite excited as well, and is doing a lot of drawing at her camp. Snakes mostly. We are so not surprised. She likes camp.
When we get home, we have to move quickly into gear to get her 7th birthday party going on, a pool party at the condo. Rain date and all (it is that time of the year).
Personally, I love those summer storms. They soak the garden so I don't have to, and make life easier of course, eliminating a watering or two. And they are heavy enough sometimes to rinse off the dusty car.
Tuesday, June 26, 2007
Some Musings About Target
You know, you can tell a lot about the world from Target. Everyone goes there, right? Fess up, you know you love it. Today, while I was watching the world go by for a while at Starbucks, right inside our SuperTarget, I kind of crystallized some observations I have been able to make lately.
If you go to Target about 10 AM on a weekday, you are there with young mothers with small infants or toddlers in the carts, and older people. By older I mean much older than me, with the white hair and quad canes. Target is sparsely populated in these early shopping hours, but it is easy to get in and out quickly. Not that I feel I have to do that, but you could.
In the later afternoon, the moms of preschoolers and some grade schoolers are there, kids in tow, as well as high schoolers and others who are out and about after 3 PM. The little snack bar area is much more full of folks indulging in an emergency bag of popcorn or other snack food. People are more likely to impulse buy, either for the kids or themselves, then, I think. You know, you have been at work part of the day, you are more distracted, etc.
When I have been on leave, these are the times I am most likely to be there, browsing or shopping (or just having a grande iced coffee). Shopping at Target is much more peaceful in the "off" hours. Before the food store rush right after work, the Saturday errand madness or the later in the evening, cranky kids, parents trying to squeeze in a few errands before feeding their brood from the nearby McDonalds kind of time. And the sales associates are more rushed, less warm and fuzzy, you know, like the rest of us!
My time as a "stay at home" sick person has led me to these random thoughts, blame it on that. The "advantages" of medical leave, I guess. That and being able to have a leisurely mani/pedi in the middle of an afternoon.
Not too high a price to pay for queasy stomach and lightheadedness, right? Oh yeah.
If you go to Target about 10 AM on a weekday, you are there with young mothers with small infants or toddlers in the carts, and older people. By older I mean much older than me, with the white hair and quad canes. Target is sparsely populated in these early shopping hours, but it is easy to get in and out quickly. Not that I feel I have to do that, but you could.
In the later afternoon, the moms of preschoolers and some grade schoolers are there, kids in tow, as well as high schoolers and others who are out and about after 3 PM. The little snack bar area is much more full of folks indulging in an emergency bag of popcorn or other snack food. People are more likely to impulse buy, either for the kids or themselves, then, I think. You know, you have been at work part of the day, you are more distracted, etc.
When I have been on leave, these are the times I am most likely to be there, browsing or shopping (or just having a grande iced coffee). Shopping at Target is much more peaceful in the "off" hours. Before the food store rush right after work, the Saturday errand madness or the later in the evening, cranky kids, parents trying to squeeze in a few errands before feeding their brood from the nearby McDonalds kind of time. And the sales associates are more rushed, less warm and fuzzy, you know, like the rest of us!
My time as a "stay at home" sick person has led me to these random thoughts, blame it on that. The "advantages" of medical leave, I guess. That and being able to have a leisurely mani/pedi in the middle of an afternoon.
Not too high a price to pay for queasy stomach and lightheadedness, right? Oh yeah.
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