I forgot to post this a few days ago. On Sunday, I made poor Alan go with us to IHOP. Why I selected IHOP, I am not really sure, but I got it into my head that we should do it. Early in the morning, before the Church rush. Well, we were less successful on the timing, but we got there, with a 20 minute wait.
But here is the kicker! I opened the menu and to my horror, I noted that I now qualified for senior meals. At 55!!!
And to add insult to injury, the meals are all named "senior pancakes and bacon" or "senior rooty tooty fresh and fruity" (as it I would ever actually order that outloud). I couldn't do it. Not for the couple of dollar savings. I just couldn't. I admit to feeling about 75 some days, but I mostly don't think of myself as a "senior" quite yet.
Alan pointed out that if I made different restaurant choices (that is to say, ones that are less suburban and chain oriented) I would not have to deal with this insult. Before coffee.
I just had to share this.
Tuesday, February 20, 2007
On My Own
Alan departed yesterday and so today I am flying solo. Since the morning time is usually my best time of the day, I got up, started my/our morning routine (pack the nutritious lunch, try to get her to eat a decent breakfast) and it all went rather smoothly. I told Sofie that today was going to be a "not so cold day" so she was all excited and wanted to wear a short sleeved shirt and shorts. I nixed the shorts (it is February, for goodness sakes!!!). Big complaints. But she managed. Somehow, all my matching of socks when she was a toddler have not seemed to have had the right influence and her sock choices are often quite dramatic in terms of contrast to her outfits. Today was no exception. It is a first grader thing, this choosing of the clothes. And I just have to breathe through it, and let her go. Sometimes I have to intervene, however, like yesterday when she had a pair of striped leggings on and was about to "match" it to a striped top in a completely different color scheme. I could not, in good conscience and as homage to "What Not to Wear, Kids Edition", let her do it. I convinced her to wear the cute coordinating red top instead.
For the next couple of weeks, until Brenda arrives the evening of March 5th, I am on my own. Well, not exactly, Jamie has been in the wings, was over yesterday to go to the airport with us (which was good, because about that time, I kind of hit the wall on exhaustion again) and in general, share some dinners, etc. She has been also sharing in the Sofie drama. Sofie has been in full out drama brat mode some days, with tears, shouting, and a lot of oppositional behaviors. I know she is going through a hard time with all of this.
One of the frequent discussions (dare I say arguments?) we have is that it isn't fair that if I am not going to work, she has to go to school. Nothing I say to her is going to change her little opinion of that.
Homework and all that are still sure to incite a bit of drama, some tears, and require a whole lot of patience on our parts. Math (they give them these sheets with 100 problems, yesterday it was the 9's for addition). So she did the "easy ones" first, 9+0, 9+1, 9+2, etc. But then really balked at trying the harder stuff.
She is still struggling with reading too, although we are persisting in the nightly plan of her reading to us and then we read to her. Her snake obsession continues, the reading material of late has been her new book on King Cobras (which has a snake model embedded into the book, so she can learn all about the digestive system, etc.). She loves this. Not my idea of ideal bedtime reading, but if that is what she likes and wants, who am I to disagree?
I have made a short list of "projects" to try to tackle over the next couple of weeks. They include prepping for taxes (always a favorite), organizing the disaster I call my office, and attempting to clear out some of the huge amount of clutter and toys and junk from Sofie's room, without her really noticing that I have pared down some of her collections (stuffed animals, plastic whatevers from who knows where, all the stuff of a six year old's room). So far, I have only made a dent in the Sofie clean up but I have a week here at least to go.
I loved having Alan here, and Laurie and Maya before him. But I have to say, I am also looking forward to some days just alone. I need to have some time by myself (really by myself) to process the past two months and figure out what I need to move forward. Friends have suggested getting a therapist (I had one a year or so ago, I could go back to her I guess), but I am not sure that "getting to know you" thing with a new therapist is what I need. If there was someone who I clicked with, great, who had some experience dealing with people with potentially terminal illness, but the therapist "try outs" (for which I have to pay and then make the tough call) well, that doesn't thrill me. Am I resisting because I am afraid to go there?
Or is it after a variety of therapist experiences, some great, some a disaster, I am just gun shy?
This is my (very precious and possibly shorter) life we are talking about. I need the "right" person and I am not quite sure how to proceed.
More food for thought on this week on my own.
For the next couple of weeks, until Brenda arrives the evening of March 5th, I am on my own. Well, not exactly, Jamie has been in the wings, was over yesterday to go to the airport with us (which was good, because about that time, I kind of hit the wall on exhaustion again) and in general, share some dinners, etc. She has been also sharing in the Sofie drama. Sofie has been in full out drama brat mode some days, with tears, shouting, and a lot of oppositional behaviors. I know she is going through a hard time with all of this.
One of the frequent discussions (dare I say arguments?) we have is that it isn't fair that if I am not going to work, she has to go to school. Nothing I say to her is going to change her little opinion of that.
Homework and all that are still sure to incite a bit of drama, some tears, and require a whole lot of patience on our parts. Math (they give them these sheets with 100 problems, yesterday it was the 9's for addition). So she did the "easy ones" first, 9+0, 9+1, 9+2, etc. But then really balked at trying the harder stuff.
She is still struggling with reading too, although we are persisting in the nightly plan of her reading to us and then we read to her. Her snake obsession continues, the reading material of late has been her new book on King Cobras (which has a snake model embedded into the book, so she can learn all about the digestive system, etc.). She loves this. Not my idea of ideal bedtime reading, but if that is what she likes and wants, who am I to disagree?
I have made a short list of "projects" to try to tackle over the next couple of weeks. They include prepping for taxes (always a favorite), organizing the disaster I call my office, and attempting to clear out some of the huge amount of clutter and toys and junk from Sofie's room, without her really noticing that I have pared down some of her collections (stuffed animals, plastic whatevers from who knows where, all the stuff of a six year old's room). So far, I have only made a dent in the Sofie clean up but I have a week here at least to go.
I loved having Alan here, and Laurie and Maya before him. But I have to say, I am also looking forward to some days just alone. I need to have some time by myself (really by myself) to process the past two months and figure out what I need to move forward. Friends have suggested getting a therapist (I had one a year or so ago, I could go back to her I guess), but I am not sure that "getting to know you" thing with a new therapist is what I need. If there was someone who I clicked with, great, who had some experience dealing with people with potentially terminal illness, but the therapist "try outs" (for which I have to pay and then make the tough call) well, that doesn't thrill me. Am I resisting because I am afraid to go there?
Or is it after a variety of therapist experiences, some great, some a disaster, I am just gun shy?
This is my (very precious and possibly shorter) life we are talking about. I need the "right" person and I am not quite sure how to proceed.
More food for thought on this week on my own.
Thursday, February 15, 2007
Baby Steps
Today, I awoke and wasn't immediately hacking. A good sign! I got up, did a bit of coughing, and then self medicated with the non narcotic drugs. I look for steps forward every day.
I was able to get the breakfast out, the lunch made and the kid up and dressed without being a mean Mom, a good improvement from yesterday.
I keep looking for signs that I am ready to perhaps go back to work soon. They simply aren't there. To the contrary, I usually have to go lay down after a couple of hours in the AM (today Alan and I ventured to Morehead Montessori to be "lunch parents" which they ask for on the Third Thursdays of each month, so the teachers can eat in peace. It was on one hand lovely to be greeted by the ever-enthusiastic Sofie who jumped up and hugged Alan upon arrival. But also a bit disturbing to see how these little kids eat. Today's cafeteria choice was grilled cheese, tater tots, a cookie and milk. And some kind of tiny cup with vegetables in in that was pretty much being ignored by all the kids. It turned out to be veggie soup. A nod to nutrition (what is with the need for tater tots with a grilled cheese?) but only nutritious if they consume it. Most kids began by eating the tater tots, doused in ketchup (which as we all recall, can be counted as a vegetable). Then the cookie. Then on to figuring out how to eat some of the grilled cheese. Some ate the middle only. Some removed the crusts (and about half the sandwich), a couple didn't bother at all and simply didn't pick it up.
Sofie actually did well, I plan her take to school lunches with her tummy size in mind. She eats a half a sandwich, never a whole, so that worked (just spread more peanut butter on the one piece of bread), oranges, and oreos. Never mind the order in which they were consumed, they got eaten. She had not gotten her milk, so I made her do it. First of all, how can you even eat peanut butter without milk to wash it down? And second, she needs the milk calories.
She was delighted we were there. And to make the day better, she was a "car rider" (this is what they call the kids who actually depart school when it is over at 3:10 PM). I got her and took her for a hot chocolate at Starbucks (since Alan was having a phone meeting at 3-4). We returned and they have gone off to Gold's Gym for an adventure. Alan is being a trouper, he has "the cold" too, but is doing Sofie duty with great and endearing charm.
Sofie is totally in love with him, she positively glows when he walks in the room. I like watching that.
It has also been good to have Alan around to talk to. These are troubling times and I need people I am really close to to have "those kind of conversations". I am not ready to head to a therapist, I don't think that is it, it is more talking out loud about the things that are so scary.
OK, I am supposed to be resting right now, so back to bed I go.
I was able to get the breakfast out, the lunch made and the kid up and dressed without being a mean Mom, a good improvement from yesterday.
I keep looking for signs that I am ready to perhaps go back to work soon. They simply aren't there. To the contrary, I usually have to go lay down after a couple of hours in the AM (today Alan and I ventured to Morehead Montessori to be "lunch parents" which they ask for on the Third Thursdays of each month, so the teachers can eat in peace. It was on one hand lovely to be greeted by the ever-enthusiastic Sofie who jumped up and hugged Alan upon arrival. But also a bit disturbing to see how these little kids eat. Today's cafeteria choice was grilled cheese, tater tots, a cookie and milk. And some kind of tiny cup with vegetables in in that was pretty much being ignored by all the kids. It turned out to be veggie soup. A nod to nutrition (what is with the need for tater tots with a grilled cheese?) but only nutritious if they consume it. Most kids began by eating the tater tots, doused in ketchup (which as we all recall, can be counted as a vegetable). Then the cookie. Then on to figuring out how to eat some of the grilled cheese. Some ate the middle only. Some removed the crusts (and about half the sandwich), a couple didn't bother at all and simply didn't pick it up.
Sofie actually did well, I plan her take to school lunches with her tummy size in mind. She eats a half a sandwich, never a whole, so that worked (just spread more peanut butter on the one piece of bread), oranges, and oreos. Never mind the order in which they were consumed, they got eaten. She had not gotten her milk, so I made her do it. First of all, how can you even eat peanut butter without milk to wash it down? And second, she needs the milk calories.
She was delighted we were there. And to make the day better, she was a "car rider" (this is what they call the kids who actually depart school when it is over at 3:10 PM). I got her and took her for a hot chocolate at Starbucks (since Alan was having a phone meeting at 3-4). We returned and they have gone off to Gold's Gym for an adventure. Alan is being a trouper, he has "the cold" too, but is doing Sofie duty with great and endearing charm.
Sofie is totally in love with him, she positively glows when he walks in the room. I like watching that.
It has also been good to have Alan around to talk to. These are troubling times and I need people I am really close to to have "those kind of conversations". I am not ready to head to a therapist, I don't think that is it, it is more talking out loud about the things that are so scary.
OK, I am supposed to be resting right now, so back to bed I go.
Wednesday, February 14, 2007
Sick and Tired of Being Sick and Tired
On the day I wrote the last post, I was truly beginning to feel a bit better from this lingering upper respiratory illness and in general. Then, the next day (which happened to be my birthday), I woke up and felt sick all over again. I really struggled all morning with trying to stop coughing but was singularly unsuccessful. Finally I called my doctor for a killer prescription cough medicine, since the Costco faux Robitussin wasn't cutting it.
I ended up having to go in again. Not that I don't like them, but it was my birthday, I was crabby and tired (from coughing, mostly) and hadn't been able to eat a thing all day. I realized in that visit that I was just over it. Over being sick, over having to visit doctors nearly weekly, just over it.
And I have hardly even thought about the cancer at all, being as I have had all these other distractions.
I got the cough stuff, with a kick ass narcotic in it (take only 1 tsp every 12 hours!). And antibiotics just in case it was bacterial.
The day itself was lovely, with all sorts of things arriving (thanks CJ and Lori for the Edible Fruit arrangement, delicious!) and to the "extended Girl Posse" (Brenda, Pam, Lisa, Eileen, Pat, Alan ahd Kerry E.) for arranging the most decadent of chocolate cakes ever! The baker herself delivered it (I was huddled in bed at the time and refused to be photographed with my cake, but I believe photos were taken!).
At 4:15, Jamie, Beth, Laurie and I went to see "Because I Said So" the new Diane Keaton film which had been receiving terrible reviews. I didn't care, I wanted a light chick flick to take my mind off the coughing and general malaise. It did the trick, I was armed with a whole new bag of Riccola cough drops and made it through.
We got home to Sofie and Ashley (her fabulous babysitter) and all had some of the cake. Oh my goodness, now I know what "death by chocolate" could feel like. But it was wonderful.
I then went back to bed, exhausted at 7 PM. The team took over and got the sugar-high little girl settled down and ready for bed.
This was the last night Laurie was here. The next day and night I thought I would be on my own, but was still too punk to function. Sofie had a long play date with Adrian, thanks to his parents Ken and Alexis for taking her. In the PM, Beth saved the day, bringing with her a delightful teenager (also named Ashley) who entertained Sofie for hours. It was great and felt completely blessed to have such great and creative friends.
We managed to get up and out the door on Sunday for ERUUF, and Sofie, although she protests RE *religious education* every time, seemed to have a great deal of fun. She left with Isak to play for a while, then in the afternoon, her babysitter came to entertain her so I could volunteer for a benefit for Cornucopia House (a Chapel Hill based cancer support program). I had made the commitment months ago, (before any of this new eventfulness in my life was going on) and I was determined to keep it. I had an easy volunteer job at the auction, it was a lovely event and I hope they made a lot of money. The event is called "A Chocolate Affair" and there were tons of delightful chocolate desserts all over the place, in addition to coffee and big glasses of milk. I know I am sick, because I wasn't tempted by any of it! So not normal. Chocolate usually rules.
Alan arrived last night (Tuesday) and today I am feeling better. I was the bitch mother from hell in the morning (not good at all) as we tried to get the last of the valentines ready for school, get dressed and have breakfast and still make it out of there before the tardy bell. While I am not healed, I do feel a little less sick, less coughing, more energy. And my bloodwork from Monday confirmed that my anemia is getting better (four units of blood later) as my red blood count improves. Yay, more energy. I used it today to clean out the fridge, something I "normally" do routinely each Sunday and have not done for nearly a month and a half.
It is looking daily for these little bits of good things, little indicators that I am moving in the right direction and actually getting stronger and more well, that has become something that I look forward to.
I am profoundly aware of how little I would be able to function or get through all this without the love and kindness and good will of friends, near and far.
So I hope this week to try to do a bit more, not push, but try, and see if perhaps next week, I might be able to go back to work a bit, even if part time.
Oh, and speaking of blessings.....I got word from the HR person at my work that I have been "gifted" with a total of 1040 hours of share leave!!! Even with being out most of January and February, that is a lot of time. Some of it from folks I don't even know, many donated as anonymous donors. But how wonderful. It does make me feel less inclined to push too hard, knowing that I do have this cushion of time to help me make it work.
OK, must get off the computer now and get dressed. It is after noon! But I showered and feel a lot more human, so that has to be good.
I ended up having to go in again. Not that I don't like them, but it was my birthday, I was crabby and tired (from coughing, mostly) and hadn't been able to eat a thing all day. I realized in that visit that I was just over it. Over being sick, over having to visit doctors nearly weekly, just over it.
And I have hardly even thought about the cancer at all, being as I have had all these other distractions.
I got the cough stuff, with a kick ass narcotic in it (take only 1 tsp every 12 hours!). And antibiotics just in case it was bacterial.
The day itself was lovely, with all sorts of things arriving (thanks CJ and Lori for the Edible Fruit arrangement, delicious!) and to the "extended Girl Posse" (Brenda, Pam, Lisa, Eileen, Pat, Alan ahd Kerry E.) for arranging the most decadent of chocolate cakes ever! The baker herself delivered it (I was huddled in bed at the time and refused to be photographed with my cake, but I believe photos were taken!).
At 4:15, Jamie, Beth, Laurie and I went to see "Because I Said So" the new Diane Keaton film which had been receiving terrible reviews. I didn't care, I wanted a light chick flick to take my mind off the coughing and general malaise. It did the trick, I was armed with a whole new bag of Riccola cough drops and made it through.
We got home to Sofie and Ashley (her fabulous babysitter) and all had some of the cake. Oh my goodness, now I know what "death by chocolate" could feel like. But it was wonderful.
I then went back to bed, exhausted at 7 PM. The team took over and got the sugar-high little girl settled down and ready for bed.
This was the last night Laurie was here. The next day and night I thought I would be on my own, but was still too punk to function. Sofie had a long play date with Adrian, thanks to his parents Ken and Alexis for taking her. In the PM, Beth saved the day, bringing with her a delightful teenager (also named Ashley) who entertained Sofie for hours. It was great and felt completely blessed to have such great and creative friends.
We managed to get up and out the door on Sunday for ERUUF, and Sofie, although she protests RE *religious education* every time, seemed to have a great deal of fun. She left with Isak to play for a while, then in the afternoon, her babysitter came to entertain her so I could volunteer for a benefit for Cornucopia House (a Chapel Hill based cancer support program). I had made the commitment months ago, (before any of this new eventfulness in my life was going on) and I was determined to keep it. I had an easy volunteer job at the auction, it was a lovely event and I hope they made a lot of money. The event is called "A Chocolate Affair" and there were tons of delightful chocolate desserts all over the place, in addition to coffee and big glasses of milk. I know I am sick, because I wasn't tempted by any of it! So not normal. Chocolate usually rules.
Alan arrived last night (Tuesday) and today I am feeling better. I was the bitch mother from hell in the morning (not good at all) as we tried to get the last of the valentines ready for school, get dressed and have breakfast and still make it out of there before the tardy bell. While I am not healed, I do feel a little less sick, less coughing, more energy. And my bloodwork from Monday confirmed that my anemia is getting better (four units of blood later) as my red blood count improves. Yay, more energy. I used it today to clean out the fridge, something I "normally" do routinely each Sunday and have not done for nearly a month and a half.
It is looking daily for these little bits of good things, little indicators that I am moving in the right direction and actually getting stronger and more well, that has become something that I look forward to.
I am profoundly aware of how little I would be able to function or get through all this without the love and kindness and good will of friends, near and far.
So I hope this week to try to do a bit more, not push, but try, and see if perhaps next week, I might be able to go back to work a bit, even if part time.
Oh, and speaking of blessings.....I got word from the HR person at my work that I have been "gifted" with a total of 1040 hours of share leave!!! Even with being out most of January and February, that is a lot of time. Some of it from folks I don't even know, many donated as anonymous donors. But how wonderful. It does make me feel less inclined to push too hard, knowing that I do have this cushion of time to help me make it work.
OK, must get off the computer now and get dressed. It is after noon! But I showered and feel a lot more human, so that has to be good.
Thursday, February 08, 2007
The Stealth Cuddler
For the past few nights, Ms. Sofie has come into my bedroom in the wee hours of the morning and, carrying her blankie (now named Yang Yang for reasons I cannot even begin to figure out), and her pillow, and snuggling into the other side of my bed next to me.
I think, with the friends visiting and doing much of the going to bed routine with her, she is missing her mommy time. I have been going in her room just after the book reading and teeth brushing are all done and doing our nightly "routine" which consists of turning off the lights, then we sprinkle "dreaming dust" in each other's eyes and then we sing a song I made up about having "beautiful, colorful dreams". It is very sweet and then I rub her tummy until I hear the snoring.
Even on the nights when I would rather just stay in my bed, I do this because I know that this is a very important part of our bonding, our closeness. And that is also why, although my darling daughter squirms and kicks all night long in my bed, I really don't want to be too harsh and toss her back to her room. She seems to really need the body contact now, another way of extending the love, then connection, the bond that we have.
She is trying to be a good cooperator, but she is also being a very bossy girl. Laurie has called her on it and I hope Alan will as well, when he visits next week. My daughter is rather strong willed (really? how surprising!!!) and can be a bit of a badass in demanding her own way. I have no idea where she gets that from. You know, children are born with their temperaments. Or so they say.
The truth is, I need the closeness to her as well, and sometimes I just reach out in the middle of the night to stroke her little head, or simply listen to her breathing (or snoring). I love her more than I ever thought I was capable of loving anyone and I need all the connections and cuddling I can get, too.
I think, with the friends visiting and doing much of the going to bed routine with her, she is missing her mommy time. I have been going in her room just after the book reading and teeth brushing are all done and doing our nightly "routine" which consists of turning off the lights, then we sprinkle "dreaming dust" in each other's eyes and then we sing a song I made up about having "beautiful, colorful dreams". It is very sweet and then I rub her tummy until I hear the snoring.
Even on the nights when I would rather just stay in my bed, I do this because I know that this is a very important part of our bonding, our closeness. And that is also why, although my darling daughter squirms and kicks all night long in my bed, I really don't want to be too harsh and toss her back to her room. She seems to really need the body contact now, another way of extending the love, then connection, the bond that we have.
She is trying to be a good cooperator, but she is also being a very bossy girl. Laurie has called her on it and I hope Alan will as well, when he visits next week. My daughter is rather strong willed (really? how surprising!!!) and can be a bit of a badass in demanding her own way. I have no idea where she gets that from. You know, children are born with their temperaments. Or so they say.
The truth is, I need the closeness to her as well, and sometimes I just reach out in the middle of the night to stroke her little head, or simply listen to her breathing (or snoring). I love her more than I ever thought I was capable of loving anyone and I need all the connections and cuddling I can get, too.
Wednesday, February 07, 2007
The Power of Steroids
I kind of understand why athletes use steroids. I get some in my "pre-meds" with the chemo and the day after, I feel kind of like superwoman. I felt great this am, full of energy, got Sofie to school after making a nutritious lunch, then took Maya to the airport. Following that, we did errands, had a nice lunch, I went to get my hair trimmed and never felt a bit tired. It is now 5:30 (almost) and I have to go help Sofie tackle her homework, never the most fun job but one that needs doing.
Jamie and I both felt the power of the steroids today. Tomorrow, I will go back to "normal" post chemo behavior, with periods of exhaustion, as my red blood count is still nowhere where it should be. But today, today I felt like I could hit one out of the park.
Tomorrow, we are taking Sofie to see Jane, the wonderful psychotherapist we found in Durham a couple of years ago. She saw Sofie for a while, and then we went on an "as needed basis". Last week, Jamie and I met with her to talk about what is going on, the things Sofie is experiencing and saying and to make a plan to start bringing her in to see Jane on a more regular basis. These are tough times for the little girl and we want her to have all the support she can get. And she loves going to see Jane, who has an extensive puppet and toy collection. And a wealth of experience with kids, so I know she is in good hands.
I am not supposed to be typing much (too much "friction" bad for the side effects of this drug) so I will stop here for now. Lasagna is thawed (thanks Sharon and Tracey) for dinner and we will have a nice evening. It was warmer today, almost up to 50 degrees but not quite. Hopefully tomorrow will still be in the mid-forties.
Day by day, that is how I am doing it.
Jamie and I both felt the power of the steroids today. Tomorrow, I will go back to "normal" post chemo behavior, with periods of exhaustion, as my red blood count is still nowhere where it should be. But today, today I felt like I could hit one out of the park.
Tomorrow, we are taking Sofie to see Jane, the wonderful psychotherapist we found in Durham a couple of years ago. She saw Sofie for a while, and then we went on an "as needed basis". Last week, Jamie and I met with her to talk about what is going on, the things Sofie is experiencing and saying and to make a plan to start bringing her in to see Jane on a more regular basis. These are tough times for the little girl and we want her to have all the support she can get. And she loves going to see Jane, who has an extensive puppet and toy collection. And a wealth of experience with kids, so I know she is in good hands.
I am not supposed to be typing much (too much "friction" bad for the side effects of this drug) so I will stop here for now. Lasagna is thawed (thanks Sharon and Tracey) for dinner and we will have a nice evening. It was warmer today, almost up to 50 degrees but not quite. Hopefully tomorrow will still be in the mid-forties.
Day by day, that is how I am doing it.
Tuesday, February 06, 2007
Damn Those Numbers
So today was treatment number two. The bloodwork was done last Friday. I got to clinic (same old, same old). It pisses me off that when I get weighed in, the weight has not changed in a month, even though I am eating half of what I ate before I felt so sick....how on earth can I have cancer and still manage not to lose weight? It is hopeless.
So the numbers. The cancer marker (CA 125) was up. Way up, to 472 from 165 on January 3rd. Not good. They (doctor and nurse) explained that sometimes it gets worse before we see improvement. Evidently, Dr. Valea went to one of his gyne-oncologists meetings last week and kind of presented my case. I was supposed to be fine, out of the woods, not having all this crappy stuff happening. And treatment was supposed to have worked. I seem to be very treatment resistant. Nothing I can personally control or change, but when I think about it, I have always been kind of drug resistant.
I need 4 Advil instead of the usual two. When I was pregnant from the in-vitro and it was determined to be a "bad pregnancy", they gave me Methotrexate (also used for cancer treatments) to terminate the pregnancy. It did not work. The next week, they repeated the treatment and when I returned the following week, the fetus was alive and well, and they had to surgically terminate that pregnancy. Hmmmmm, maybe I just don't respond to the big drugs.
This is not good news. I am trying to remain optimistic, but I am scared. If the Doxil doesn't work, they might try an aggressive combination of drugs. My body is already not feeling so happy about all the stuff that is happening. I really hope the Doxil starts to work. But it is a time and waiting game.
Meanwhile, I hear tell that the West Coast is a-buzz with planning for a benefit for me and all sorts of other things. It is odd to feel so out of control with this part of my life, it really is. I was planning to pick up a birthday cake for Friday so friends could gather in my home for a little bit of celebrating, but I was instructed by Ms. Laribee not to do it, that a cake was "being provided". Maybe she is flying Elizabeth Faulkner to Durham to create something for me, now that would be a present!!!!
So I am not supposed to be typing (too much friction post treatment) and I will make this brief. Laurie and Maya have taken Sofie out to dinner at Whole Foods and will be bringing something back for me. I don't have much appetite at night usually anyways. It is delightful to have them here, they are basically taking over Sofie care and she is so enamoured of Maya that she is allowing it to happen without a lot of protest! It is very cute, actually.
But I know that she (Sofie) told Jamie that she did not think I was going to get better. That is so sad. I don't know why she is thinking that or what I can do to be both realistic and also not scare her. I don't know if I will die sooner or not. I hope not. I am trying to fight, to remain optimistic, to "choose life" and meditate on that daily. But I am also aware that I am not controlling this either. The cancer is powerful. I don't want it to be too powerful, I want to be able to fight back and make it back off. But right now, I barely even have the energy for that. I am hoping to have some Reiki treatments soon, perhaps that will help.
The e-mails and cards I have been receiving from dear friends have warmed my heart and given me a lot of hope. Keep 'em coming, please.
Much love,
Debra
So the numbers. The cancer marker (CA 125) was up. Way up, to 472 from 165 on January 3rd. Not good. They (doctor and nurse) explained that sometimes it gets worse before we see improvement. Evidently, Dr. Valea went to one of his gyne-oncologists meetings last week and kind of presented my case. I was supposed to be fine, out of the woods, not having all this crappy stuff happening. And treatment was supposed to have worked. I seem to be very treatment resistant. Nothing I can personally control or change, but when I think about it, I have always been kind of drug resistant.
I need 4 Advil instead of the usual two. When I was pregnant from the in-vitro and it was determined to be a "bad pregnancy", they gave me Methotrexate (also used for cancer treatments) to terminate the pregnancy. It did not work. The next week, they repeated the treatment and when I returned the following week, the fetus was alive and well, and they had to surgically terminate that pregnancy. Hmmmmm, maybe I just don't respond to the big drugs.
This is not good news. I am trying to remain optimistic, but I am scared. If the Doxil doesn't work, they might try an aggressive combination of drugs. My body is already not feeling so happy about all the stuff that is happening. I really hope the Doxil starts to work. But it is a time and waiting game.
Meanwhile, I hear tell that the West Coast is a-buzz with planning for a benefit for me and all sorts of other things. It is odd to feel so out of control with this part of my life, it really is. I was planning to pick up a birthday cake for Friday so friends could gather in my home for a little bit of celebrating, but I was instructed by Ms. Laribee not to do it, that a cake was "being provided". Maybe she is flying Elizabeth Faulkner to Durham to create something for me, now that would be a present!!!!
So I am not supposed to be typing (too much friction post treatment) and I will make this brief. Laurie and Maya have taken Sofie out to dinner at Whole Foods and will be bringing something back for me. I don't have much appetite at night usually anyways. It is delightful to have them here, they are basically taking over Sofie care and she is so enamoured of Maya that she is allowing it to happen without a lot of protest! It is very cute, actually.
But I know that she (Sofie) told Jamie that she did not think I was going to get better. That is so sad. I don't know why she is thinking that or what I can do to be both realistic and also not scare her. I don't know if I will die sooner or not. I hope not. I am trying to fight, to remain optimistic, to "choose life" and meditate on that daily. But I am also aware that I am not controlling this either. The cancer is powerful. I don't want it to be too powerful, I want to be able to fight back and make it back off. But right now, I barely even have the energy for that. I am hoping to have some Reiki treatments soon, perhaps that will help.
The e-mails and cards I have been receiving from dear friends have warmed my heart and given me a lot of hope. Keep 'em coming, please.
Much love,
Debra
Monday, February 05, 2007
Lost Time, Lost Self
How did it get to be February already? It was just the beginning of the year. Time has lost me, or I have lost it.
Slightly over three weeks ago, I wrote about the intense fatigue I was experiencing, despite the transfusion of two units of dark red blood. I was shot of breath, too, and feeling, well, old. The day after I wrote that last blog entry, I went to work for a full day, and by 4 PM, the last meeting of that busy day, I was sitting in the conference room with a coat on and a blanket, shivering and panting. My boss took one look at me and said "go home!". But I had my coaching session that night, (which has turned into a comfort fest and a place to just talk about how crappy it feels to be me right now). So I went, and got home about 8 PM.
Sofie was all bathed and ready for bed thanks to Ashley, her fabulous babysitter who has been a wonderful addition to the extended family......I took over from there, and got into bed with Sofie for reading (she reads to me, then I read to her, then we have a sweet little bedtime routine where we sing about having "beautiful, colorful dreams". Then I rub her tummy until she is snoring and I sneak out).
The next day, I planned to work from home, because I had a visit planned with my GP, the fabulous Dr. Marum.....the gyne-onc folks manage the cancer, they seem to prefer passing along the other stuff (like the intense fatigue) to my primary provider.
I worked some at home, but was still really cold and short of breath, especially going up and down the stairs to my office. I did a few errands before the doctor visit in the afternoon, but did not get finished with the post office (the line got too long). This is relevant, you will see!
I walked about 20 feet from my car to her office and arrived short of breath. She took one look at me, and then looked at my hands. My nailbeds were purple/blue and my "pulse ox" (that weird thing they stick your finger into) was bad. She listened to my chest and then said "You need to get to the emergency room, right now". Being me, I said, "OK, but I just have to go back to the post office to mail the packages.....". She was emphatic, "get there now...and have a friend go with you". There was something in her tone, it got me out of there, I called Jamie and she called Tracey who met me at the house and off we went.
I got to the ER about 4-ish. I waited for a bit, then they did the usual vital signs and checking to triage me to see if I was about to keel over (I wasn't), and then we waited. And waited. And waited. Tracey had to go to do a massage, so Betty (yes, the same brave Betty who came to the 6 AM gallbladder surgery with me) was recruited.
Somewhere between Tracey leaving and Betty getting there, I was finally given a little room and a gurney to be on and then the parade of young earnest residents started to come in and do their thing. First I got another chest X-ray. I had just had one the previous Friday, but no, that would not do. Then more blood was drawn, and they started an IV. The first resident was a bit distracted and seemed a little flakey, but she disappeared at the shift change (about 7 I think) and a doctor that I knew from clinic showed up. Dr. Reddick is terrific and made me feel a lot more like something was happening. A cardiac test was done (in the room) and then they sent me for yet another CT scan, this time of my chest.
Then more waiting. By now, Betty had arrived and wisely had brought food from Whole Foods Cafe (which I think of as my home away from home food). I was actually starving, having not really eaten much that day at all, so we both chowed down. Who knew a pimento cheese sandwich (a Southern thing for my West Coast readers) could be so delicious?).
At some point, they came in with the news....I had pulmonary emboli. I remembered my mom had once had an embolism post surgery (a blood clot that kind of breaks loose and travels, in this case, to my lungs). But the keyword here was emboli. Not one. Not two. There were pretty much clots in all the lobes of my lungs. Eeeeeeew. So they began the long process of trying to find me a bed. Betty patiently waited. And waited. About 1 AM, I was brought to my room. My nurse introduced herself (Amanda) and they took vitals. Then Betty went home and they told me to try to get some sleep, since the first doctors would probably be in by 5:30. I placed a call to my Uncle Lew in Palo Alto, since I was too cowardly to call my mom directly. Lew was asked to explain what was going on (since he is the expert medical person in the family) and I then dozed off, for a few short hours, with oxygen on and sitting kind of at a 90 degree angle in the bed. For a few short hours, til the anticipated arrival of the doctors at dawn.
And yes, yes they came. I was sound asleep, and the light went on and it was "showtime". The gyne oncology fellow (who I know) was in briefly, then the vitals happened and all that stuff (they were even having me save my pee, for goodness sakes). Peeing was not a problem, but they are obsessed with measuring things in hospitals.
Shortly after, she returned with her little flock of residents (they are all looking like teenagers to me as I get older). They "presented" me and then discussed the new medication I was going to be on (blood thinners, injectable twice a day). And she implied they might send me home that day.
I totally had a panic attack. I was not ready to go home, still short of breath, and I had this idea I would be found by Sofie, dead in my bed. So I asked for a social work consult and got her to be my advocate for not sending me home right away. Shoot, I was still on the oxygen to breathe! And I had to be seen by the cardiology team as well. So I was for sure not ready to go.
As it turned out, I ended up staying a total of three nights, leaving on Friday. The take home message was not to over-do anymore. I really could have died if I had not gotten assistance when I did. I will forever be indebted to Dr. Marum for getting me into the ER when she did.
I am a pro at the injections, having done that sort of thing before. The clots will take as long as two months to "re-absorb" into my body. And I am dealing with the guilt of not going to work, but knowing that I really cannot. I am still short of breath a bit if I over-do stuff. And I get tired after about four hours of being awake even if I am not doing much.
So the weird thing here is that although I am getting much better at receiving (gifts of food, prayer, energy and love) from friends and family, it is still very hard for me to find myself in this position of neediness.
Friends on the West Coast (you know who you are) are evidently emailing like crazy and planning a fundraiser to help with all the out of pocket costs plus all the non covered costs like supplements, acupuncture, etc. And the endless need for childcare, since some nights, I really cannot get her home, bathed and everything, since I am just too wiped out.
The next treatment is tomorrow, Laurie Hauer, whom I have know for about 25 years, but not seen much for a long time since she moved to Santa Cruz, arrived on Saturday with her lovely teenaged daughter Maya. I still remember Maya being a two year old, and the last time I saw her she was about ten or eleven. So it was a shock to see her tall, lean and just full of self confidence, a senior on her way to college in the fall. Sofie has fallen all over her and is loving the extra attention being lavished on her. Maya will stay until Wednesday, then fly home, Laurie is here until Saturday, for the express purpose of taking care of me as I am not supposed to do anything with heat, friction or the potential of same, for at least seven days post treatment.
Tomorrow, I will have treatment number two. Coincidentally, Jamie is having her fifth treatment the same day. Jamie has been right here, with us, with Sofie, all the past few weeks. But this week, she needs time to recover from her treatment, which includes a drug for her white count that makes her feel like she has flu for about three days. So Laurie is here, taking care of me, of Sofie, so that Jamie can rest and feel nurtured too.
Life these days is just so different. I keep thinking, who am I now? I am not working (I plan to go back, but not until I feel like I can do 4-6 hours in a day without feeling totally exhausted). I am someone now who needs help with all sorts of odd things, like changing the catbox (too toxic for now), cooking the food, getting the laundry downstairs and then up again.
My house feels a little frayed around the edges, with too much clutter and not nearly enough energy to put it all away. All this time, lost to tiredness. I feel quite unproductive. I "should" be organizing a closet, sorting socks, filing and getting ready for taxes. And I will do some of that in the next two weeks, but at a snail pace, it seems.
The Debra who was able to multi-task has been temporarily sidelined. Benched. The person who claims to be me needs naps and hot tea, even though I still crave coffee. But it doesn't agree with me right now, not really. So hot tea it is.
Poor Sofie. I know she is taking a lot of this in, the comings and goings of the guests, the tired mom syndrome (last Friday, she had a little fall at school and when her teacher asked which Mom to call, she told her to call Jamie because "Mama Debra is too tired". I feel like she is slipping away from me sometimes, but then when we cuddle , I know she still loves me and wants me to feel better. I am being as creative as possible with play dates, getting them set up for each weekend, so that she has fun activities to do while I rest or just hang out. But I know she misses the mom that used to live here. The one who did stuff with her. I miss her too. But hopefully this is for the short haul and I will get much better and be able to make more memories with her. Both Jamie and I have decided that this is a priority. To create Mom memories so that if my time is cut short, she will remember me and remember fun, family times together. We are very much that, a family. And for that, I am very grateful.
Slightly over three weeks ago, I wrote about the intense fatigue I was experiencing, despite the transfusion of two units of dark red blood. I was shot of breath, too, and feeling, well, old. The day after I wrote that last blog entry, I went to work for a full day, and by 4 PM, the last meeting of that busy day, I was sitting in the conference room with a coat on and a blanket, shivering and panting. My boss took one look at me and said "go home!". But I had my coaching session that night, (which has turned into a comfort fest and a place to just talk about how crappy it feels to be me right now). So I went, and got home about 8 PM.
Sofie was all bathed and ready for bed thanks to Ashley, her fabulous babysitter who has been a wonderful addition to the extended family......I took over from there, and got into bed with Sofie for reading (she reads to me, then I read to her, then we have a sweet little bedtime routine where we sing about having "beautiful, colorful dreams". Then I rub her tummy until she is snoring and I sneak out).
The next day, I planned to work from home, because I had a visit planned with my GP, the fabulous Dr. Marum.....the gyne-onc folks manage the cancer, they seem to prefer passing along the other stuff (like the intense fatigue) to my primary provider.
I worked some at home, but was still really cold and short of breath, especially going up and down the stairs to my office. I did a few errands before the doctor visit in the afternoon, but did not get finished with the post office (the line got too long). This is relevant, you will see!
I walked about 20 feet from my car to her office and arrived short of breath. She took one look at me, and then looked at my hands. My nailbeds were purple/blue and my "pulse ox" (that weird thing they stick your finger into) was bad. She listened to my chest and then said "You need to get to the emergency room, right now". Being me, I said, "OK, but I just have to go back to the post office to mail the packages.....". She was emphatic, "get there now...and have a friend go with you". There was something in her tone, it got me out of there, I called Jamie and she called Tracey who met me at the house and off we went.
I got to the ER about 4-ish. I waited for a bit, then they did the usual vital signs and checking to triage me to see if I was about to keel over (I wasn't), and then we waited. And waited. And waited. Tracey had to go to do a massage, so Betty (yes, the same brave Betty who came to the 6 AM gallbladder surgery with me) was recruited.
Somewhere between Tracey leaving and Betty getting there, I was finally given a little room and a gurney to be on and then the parade of young earnest residents started to come in and do their thing. First I got another chest X-ray. I had just had one the previous Friday, but no, that would not do. Then more blood was drawn, and they started an IV. The first resident was a bit distracted and seemed a little flakey, but she disappeared at the shift change (about 7 I think) and a doctor that I knew from clinic showed up. Dr. Reddick is terrific and made me feel a lot more like something was happening. A cardiac test was done (in the room) and then they sent me for yet another CT scan, this time of my chest.
Then more waiting. By now, Betty had arrived and wisely had brought food from Whole Foods Cafe (which I think of as my home away from home food). I was actually starving, having not really eaten much that day at all, so we both chowed down. Who knew a pimento cheese sandwich (a Southern thing for my West Coast readers) could be so delicious?).
At some point, they came in with the news....I had pulmonary emboli. I remembered my mom had once had an embolism post surgery (a blood clot that kind of breaks loose and travels, in this case, to my lungs). But the keyword here was emboli. Not one. Not two. There were pretty much clots in all the lobes of my lungs. Eeeeeeew. So they began the long process of trying to find me a bed. Betty patiently waited. And waited. About 1 AM, I was brought to my room. My nurse introduced herself (Amanda) and they took vitals. Then Betty went home and they told me to try to get some sleep, since the first doctors would probably be in by 5:30. I placed a call to my Uncle Lew in Palo Alto, since I was too cowardly to call my mom directly. Lew was asked to explain what was going on (since he is the expert medical person in the family) and I then dozed off, for a few short hours, with oxygen on and sitting kind of at a 90 degree angle in the bed. For a few short hours, til the anticipated arrival of the doctors at dawn.
And yes, yes they came. I was sound asleep, and the light went on and it was "showtime". The gyne oncology fellow (who I know) was in briefly, then the vitals happened and all that stuff (they were even having me save my pee, for goodness sakes). Peeing was not a problem, but they are obsessed with measuring things in hospitals.
Shortly after, she returned with her little flock of residents (they are all looking like teenagers to me as I get older). They "presented" me and then discussed the new medication I was going to be on (blood thinners, injectable twice a day). And she implied they might send me home that day.
I totally had a panic attack. I was not ready to go home, still short of breath, and I had this idea I would be found by Sofie, dead in my bed. So I asked for a social work consult and got her to be my advocate for not sending me home right away. Shoot, I was still on the oxygen to breathe! And I had to be seen by the cardiology team as well. So I was for sure not ready to go.
As it turned out, I ended up staying a total of three nights, leaving on Friday. The take home message was not to over-do anymore. I really could have died if I had not gotten assistance when I did. I will forever be indebted to Dr. Marum for getting me into the ER when she did.
I am a pro at the injections, having done that sort of thing before. The clots will take as long as two months to "re-absorb" into my body. And I am dealing with the guilt of not going to work, but knowing that I really cannot. I am still short of breath a bit if I over-do stuff. And I get tired after about four hours of being awake even if I am not doing much.
So the weird thing here is that although I am getting much better at receiving (gifts of food, prayer, energy and love) from friends and family, it is still very hard for me to find myself in this position of neediness.
Friends on the West Coast (you know who you are) are evidently emailing like crazy and planning a fundraiser to help with all the out of pocket costs plus all the non covered costs like supplements, acupuncture, etc. And the endless need for childcare, since some nights, I really cannot get her home, bathed and everything, since I am just too wiped out.
The next treatment is tomorrow, Laurie Hauer, whom I have know for about 25 years, but not seen much for a long time since she moved to Santa Cruz, arrived on Saturday with her lovely teenaged daughter Maya. I still remember Maya being a two year old, and the last time I saw her she was about ten or eleven. So it was a shock to see her tall, lean and just full of self confidence, a senior on her way to college in the fall. Sofie has fallen all over her and is loving the extra attention being lavished on her. Maya will stay until Wednesday, then fly home, Laurie is here until Saturday, for the express purpose of taking care of me as I am not supposed to do anything with heat, friction or the potential of same, for at least seven days post treatment.
Tomorrow, I will have treatment number two. Coincidentally, Jamie is having her fifth treatment the same day. Jamie has been right here, with us, with Sofie, all the past few weeks. But this week, she needs time to recover from her treatment, which includes a drug for her white count that makes her feel like she has flu for about three days. So Laurie is here, taking care of me, of Sofie, so that Jamie can rest and feel nurtured too.
Life these days is just so different. I keep thinking, who am I now? I am not working (I plan to go back, but not until I feel like I can do 4-6 hours in a day without feeling totally exhausted). I am someone now who needs help with all sorts of odd things, like changing the catbox (too toxic for now), cooking the food, getting the laundry downstairs and then up again.
My house feels a little frayed around the edges, with too much clutter and not nearly enough energy to put it all away. All this time, lost to tiredness. I feel quite unproductive. I "should" be organizing a closet, sorting socks, filing and getting ready for taxes. And I will do some of that in the next two weeks, but at a snail pace, it seems.
The Debra who was able to multi-task has been temporarily sidelined. Benched. The person who claims to be me needs naps and hot tea, even though I still crave coffee. But it doesn't agree with me right now, not really. So hot tea it is.
Poor Sofie. I know she is taking a lot of this in, the comings and goings of the guests, the tired mom syndrome (last Friday, she had a little fall at school and when her teacher asked which Mom to call, she told her to call Jamie because "Mama Debra is too tired". I feel like she is slipping away from me sometimes, but then when we cuddle , I know she still loves me and wants me to feel better. I am being as creative as possible with play dates, getting them set up for each weekend, so that she has fun activities to do while I rest or just hang out. But I know she misses the mom that used to live here. The one who did stuff with her. I miss her too. But hopefully this is for the short haul and I will get much better and be able to make more memories with her. Both Jamie and I have decided that this is a priority. To create Mom memories so that if my time is cut short, she will remember me and remember fun, family times together. We are very much that, a family. And for that, I am very grateful.
Sunday, January 21, 2007
Weariness Beyond Measure
So, despite my hopes to blog on an every other day basis, the sheer exhaustion of the past weeks (months?) is making it impossible. I cannot drag myself downstairs at night, all I want to do is sleep.
The last entry was a bit more upbeat: spoiler alert! This one is going to sound like a lot of complaints. But in fact, having no energy for me is devastating. I have no expectation of being my "previous" high energy self, but I would like to be able to shower, dress, clean the cat box and fix breakfast without thinking that I will need a two hour nap.
The docs ordered iron studies this past week. What basically showed in the labs was that I am not absorbing any of the supplements (natural or otherwise) that I have been forcing down for the past nearly ten months or more. Kale, broccoli, pills by the hundreds, all for naught.
So, how to describe this feeling? I sleep at least nine hours at night, not always straight through (I have been plagued with sweats and other sleep disturbances the past two weeks), and nap when I can. I haven't worked a full week since December. I wake up thinking I am good, go downstairs, scoop the box, then take my "warm" shower, towel dry my hair, and go upstairs to attempt getting dressed. Sometimes a quick e-mail check. All this is between 6 and 7 AM. Then, I get Sofie up (imagine a teenager in a tinier body, she is hard to awaken). We work on choosing her clothing, these days, not so successfully, she is getting more and more picky and the weather is colder, so she gets pissed when I tell her she needs long sleeves not short. My daughter mostly runs warm, I run cold...like ice, these days.
By 7:30 or so, all of us should be dressed and the eating of breakfast commences. Somewhere in there I pack up the lunchbox. I usually plot the lunch in the shower, so it is pretty rote.
We make sure that everything is packed into the backpack and then, after Ms. Sofie dawdles over her food, I attempt the dread hair brushing.
Sofie had wanted to grow her hair long, and we preceeded in that direction all summer, despite the mess that happens with swimming (pool, lake, you name it, it craps out the hair). But last week, after her shrieks of "you are torturing me", I had it, and we got it cut to last year's bob, with bangs again. Yes, bangs, with all their upkeep, but I could not do it any more. It still tangles, but it is better.
So, back to the weariness. Last weekend, my friend Barbara came down from Asheville late Friday night and stayed with us until mid-afternoon on Sunday. I don't know how I would have managed if she had not. I am so tired in the evenings (evenings being defined as any time near dinner these days) that I did not have the energy to bathe Sofie or get her to bed. Barbara cooked, cleaned up after us and interacted with Sofie. I slept, a lot. I love her for this, and I hate that it is needed.
Jamie has been, despite being in her fourth cycle of six chemos, a steady presence. She has picked up Sofie some afternoons, she has hung out with us/her, and generally just been a solid person to count on. And all the while, she is dealing with nausea 24/7 two weeks out of three.
Other friends (Jamie B, mother of almost five year old twins, Tracey and Sharon, the Ingrahms, Susan and Joy, Kim, Betty and Delma) so many others have been there and offered help. I am having to say yes a lot these days, yes, I need help, yes, food deliveries will be great, etc.
Two women, Ruth and Rose, came over Thursday night with a feast for Jamie and I. Wonderful soup, deviled eggs and a great chicken salad. And more. They called as they were leaving their house, I had no notice, so working out space in the fridge was a challenge, but it worked out. And I have been eating off that feast all weekend. My appetite continues to be iffy. I feel hungry and I know I should eat protein, at least, so I have been having soups and nibbling on the chicken salad with crackers. Voracious, no, but the food is wonderful and the best part is not having to fix it.
Other friends are home, cooking as I write this, and will bring things tonight. I remember the first round of cancer treatments, when friends offered food and it really wasn't necessary. Not only could I cook, I had a huge appetite and it was not a problem to be self-sufficient. But now, with energy at an all time low, I am a willing receiver of the bounty of friends.
On Friday last week, I had a port-a cath put in. My veins, once so fabulous that it was hard to miss a stick, are now quite scarred from being used on a weekly basis. So the port-a cath goes under my skin, kind of on the right side of my body, on my upper chest. I figure, what is another scar at this point? The surgical procedure was done Friday morning under light sedation, I was awake and could feel the pressure of what they were doing, but little pain. Now my chest feels a lot like someone walked on it, but that should be gone within the week. I have a dressing on my neck (small scar to insert tube) and on my chest. I can live with that.
They also gave me two units of blood. I expected to wake up on Saturday feeling a bit more like myself, but instead, after hours of rest (home by 5:30, pretty much slept until the next morning with brief break to eat soup), but no. Today perhaps a little better, but nothing like "normal". Will I ever know that normal again?
Sometimes, this dragging around, this incredible weariness with no end in sight, brings me to tears. Of frustration, more than anything. I don't feel like I am being a good mom, I get short with Sofie and now, because one time I said that the treatments were making me tired and crabby, now she says "I sure hope that medicine works fast so I don't have a crabby mom so much". Ouch!! But she told me that she loved me anyway. We still argue, but I am trying to do that less. If I die sooners than later, I don't want her memories of me to be ones of arguing over matching her socks. They are her feet, anyway.
It is funny, how I think (or don't think) about my appearance now. Mostly I go for comfort and ease of dressing. So work is kind of a simple uniform of pants, (grey/brown/black/light grey) and a cashmere sweater (for the warmth) and earrings. I try to match the socks and if I get that all done, I call it a day.
I hope that sometime in the future I will care about clothes again, at least a little. My hair is still salt and peppery, but people seem to like it. I plan for now to keep it kinda short, again, less to worry about.
I still want manicures, my concession to grooming, but this weekend, it was too complicated to even try that, so I will figure it out later.
Every bit of energy now is precious. Keep sending yours, maybe if the iron supplements don't work, the energy sent by friends will.
My gratitude and love to all of you who write, call and keep me in your thoughts.
The last entry was a bit more upbeat: spoiler alert! This one is going to sound like a lot of complaints. But in fact, having no energy for me is devastating. I have no expectation of being my "previous" high energy self, but I would like to be able to shower, dress, clean the cat box and fix breakfast without thinking that I will need a two hour nap.
The docs ordered iron studies this past week. What basically showed in the labs was that I am not absorbing any of the supplements (natural or otherwise) that I have been forcing down for the past nearly ten months or more. Kale, broccoli, pills by the hundreds, all for naught.
So, how to describe this feeling? I sleep at least nine hours at night, not always straight through (I have been plagued with sweats and other sleep disturbances the past two weeks), and nap when I can. I haven't worked a full week since December. I wake up thinking I am good, go downstairs, scoop the box, then take my "warm" shower, towel dry my hair, and go upstairs to attempt getting dressed. Sometimes a quick e-mail check. All this is between 6 and 7 AM. Then, I get Sofie up (imagine a teenager in a tinier body, she is hard to awaken). We work on choosing her clothing, these days, not so successfully, she is getting more and more picky and the weather is colder, so she gets pissed when I tell her she needs long sleeves not short. My daughter mostly runs warm, I run cold...like ice, these days.
By 7:30 or so, all of us should be dressed and the eating of breakfast commences. Somewhere in there I pack up the lunchbox. I usually plot the lunch in the shower, so it is pretty rote.
We make sure that everything is packed into the backpack and then, after Ms. Sofie dawdles over her food, I attempt the dread hair brushing.
Sofie had wanted to grow her hair long, and we preceeded in that direction all summer, despite the mess that happens with swimming (pool, lake, you name it, it craps out the hair). But last week, after her shrieks of "you are torturing me", I had it, and we got it cut to last year's bob, with bangs again. Yes, bangs, with all their upkeep, but I could not do it any more. It still tangles, but it is better.
So, back to the weariness. Last weekend, my friend Barbara came down from Asheville late Friday night and stayed with us until mid-afternoon on Sunday. I don't know how I would have managed if she had not. I am so tired in the evenings (evenings being defined as any time near dinner these days) that I did not have the energy to bathe Sofie or get her to bed. Barbara cooked, cleaned up after us and interacted with Sofie. I slept, a lot. I love her for this, and I hate that it is needed.
Jamie has been, despite being in her fourth cycle of six chemos, a steady presence. She has picked up Sofie some afternoons, she has hung out with us/her, and generally just been a solid person to count on. And all the while, she is dealing with nausea 24/7 two weeks out of three.
Other friends (Jamie B, mother of almost five year old twins, Tracey and Sharon, the Ingrahms, Susan and Joy, Kim, Betty and Delma) so many others have been there and offered help. I am having to say yes a lot these days, yes, I need help, yes, food deliveries will be great, etc.
Two women, Ruth and Rose, came over Thursday night with a feast for Jamie and I. Wonderful soup, deviled eggs and a great chicken salad. And more. They called as they were leaving their house, I had no notice, so working out space in the fridge was a challenge, but it worked out. And I have been eating off that feast all weekend. My appetite continues to be iffy. I feel hungry and I know I should eat protein, at least, so I have been having soups and nibbling on the chicken salad with crackers. Voracious, no, but the food is wonderful and the best part is not having to fix it.
Other friends are home, cooking as I write this, and will bring things tonight. I remember the first round of cancer treatments, when friends offered food and it really wasn't necessary. Not only could I cook, I had a huge appetite and it was not a problem to be self-sufficient. But now, with energy at an all time low, I am a willing receiver of the bounty of friends.
On Friday last week, I had a port-a cath put in. My veins, once so fabulous that it was hard to miss a stick, are now quite scarred from being used on a weekly basis. So the port-a cath goes under my skin, kind of on the right side of my body, on my upper chest. I figure, what is another scar at this point? The surgical procedure was done Friday morning under light sedation, I was awake and could feel the pressure of what they were doing, but little pain. Now my chest feels a lot like someone walked on it, but that should be gone within the week. I have a dressing on my neck (small scar to insert tube) and on my chest. I can live with that.
They also gave me two units of blood. I expected to wake up on Saturday feeling a bit more like myself, but instead, after hours of rest (home by 5:30, pretty much slept until the next morning with brief break to eat soup), but no. Today perhaps a little better, but nothing like "normal". Will I ever know that normal again?
Sometimes, this dragging around, this incredible weariness with no end in sight, brings me to tears. Of frustration, more than anything. I don't feel like I am being a good mom, I get short with Sofie and now, because one time I said that the treatments were making me tired and crabby, now she says "I sure hope that medicine works fast so I don't have a crabby mom so much". Ouch!! But she told me that she loved me anyway. We still argue, but I am trying to do that less. If I die sooners than later, I don't want her memories of me to be ones of arguing over matching her socks. They are her feet, anyway.
It is funny, how I think (or don't think) about my appearance now. Mostly I go for comfort and ease of dressing. So work is kind of a simple uniform of pants, (grey/brown/black/light grey) and a cashmere sweater (for the warmth) and earrings. I try to match the socks and if I get that all done, I call it a day.
I hope that sometime in the future I will care about clothes again, at least a little. My hair is still salt and peppery, but people seem to like it. I plan for now to keep it kinda short, again, less to worry about.
I still want manicures, my concession to grooming, but this weekend, it was too complicated to even try that, so I will figure it out later.
Every bit of energy now is precious. Keep sending yours, maybe if the iron supplements don't work, the energy sent by friends will.
My gratitude and love to all of you who write, call and keep me in your thoughts.
Friday, January 12, 2007
Ice, Ice Baby
Today is Friday, the end of what seems like four weeks instead of just one. After having the treatment on Tuesday and studying up on side effects, prevention of side effects and discovering the joys of icing my hands and feet several times a day, I ended up going back to the office Wedensday and Thursday. And it was mostly good, although Wednesday night was not so good for sleeping, so I was pretty wiped yesterday. I brought my ice packs, some cushioning shoe inserts, all preventing friction on feet and hands.
I left early yesterday, and finally *hurrah* got my teeth cleaned, which both psychologically and dentally was soooo good. It had been more than a year, the whole time I was on the other chemo I could not do it, then I got too busy coming back into the world. I felt profound gratitude for the lovely dental hygienist (Ashley) who did my teeth. And as she chatted about her upcoming vacation, a short cruise to the keys and Jamaica, I realized how good I have it. This poor young girl gets exactly one week (five days) of vacation and one week of sick leave a year. Not fair. I found myself suggesting organizing tips for her office staff to approach their bosses for more creative scheduling.
But I digress. Jamie and I took Sofie to Fuddruckers for supper as a "we survived this week" treat. And then Jamie put her to bed, allowing me to collapse into my bed and just lay out. My body was tired, uncomfortable, just plain exhausted and sore. In places I did not expect. Like my butt. (too much sitting in the office, I had not considered that area one to watch out for!).
I sat with ice packs on hands and feet, watching Grey's Anatomy and then more or less crashed for the night. I had planned to go to work for a few hours today, but in fact, I will work from here a bit, and sleep some more. I have to follow my body's lead.
I find myself just savoring the things that are good, even a meeting that goes well, and trying to figure out how the next couple of months will go.
Several things have brought me to tears this week, but they are nearly all good ones: Freda, our HR specialist, without my even asking, wrote a great email to my HSL colleagues on Monday asking for more share leave. By yesterday I had 220 hours. I burst into tears at the love and support and faith my colleagues have in me.
I also have received some wonderful notes from friends and colleagues. And the most wonderful present from a group of my friends and my boss in the Administration department: A cozy blanket, pillow and sock set for when the cold in my body just takes over. It coordinates with my office decor, so it is living there for now.
I am reminded daily that although these are very uncharted waters, I am loved and blessed with friends and family who are amazing in their support. Sometimes, I just don't know how to even respond.
But I am working on it.
I left early yesterday, and finally *hurrah* got my teeth cleaned, which both psychologically and dentally was soooo good. It had been more than a year, the whole time I was on the other chemo I could not do it, then I got too busy coming back into the world. I felt profound gratitude for the lovely dental hygienist (Ashley) who did my teeth. And as she chatted about her upcoming vacation, a short cruise to the keys and Jamaica, I realized how good I have it. This poor young girl gets exactly one week (five days) of vacation and one week of sick leave a year. Not fair. I found myself suggesting organizing tips for her office staff to approach their bosses for more creative scheduling.
But I digress. Jamie and I took Sofie to Fuddruckers for supper as a "we survived this week" treat. And then Jamie put her to bed, allowing me to collapse into my bed and just lay out. My body was tired, uncomfortable, just plain exhausted and sore. In places I did not expect. Like my butt. (too much sitting in the office, I had not considered that area one to watch out for!).
I sat with ice packs on hands and feet, watching Grey's Anatomy and then more or less crashed for the night. I had planned to go to work for a few hours today, but in fact, I will work from here a bit, and sleep some more. I have to follow my body's lead.
I find myself just savoring the things that are good, even a meeting that goes well, and trying to figure out how the next couple of months will go.
Several things have brought me to tears this week, but they are nearly all good ones: Freda, our HR specialist, without my even asking, wrote a great email to my HSL colleagues on Monday asking for more share leave. By yesterday I had 220 hours. I burst into tears at the love and support and faith my colleagues have in me.
I also have received some wonderful notes from friends and colleagues. And the most wonderful present from a group of my friends and my boss in the Administration department: A cozy blanket, pillow and sock set for when the cold in my body just takes over. It coordinates with my office decor, so it is living there for now.
I am reminded daily that although these are very uncharted waters, I am loved and blessed with friends and family who are amazing in their support. Sometimes, I just don't know how to even respond.
But I am working on it.
Wednesday, January 10, 2007
Day One of Round Two
Dear Friends and Family,
First of all, thanks to all of you who have shared your thoughts, told me you are praying or meditating for me, sending me energy, light and hope. All gratefully accepted with gratitude.
Yesterday, I went to the oncologist. There are two “things”, lesions, on my liver. As far as they know, on not in. This is significant, evidently. This is considered a recurrence of the ovarian cancer, not a new cancer. Ovarian cancer is tricky, it can shed cells and sometimes they land on body parts like livers and the peritoneal cavity.
It turns out that I was a “primary non-responder” to the chemotherapy I had in the spring and summer. About 20% of the women who take it are. This is not the kind of special I wanted to be, for once, being in the other 80% would have been far more preferable. But special I am, so now they are trying a new drug. Why oh why could I have not been "special" in another way, gifted with a great singing voice (I am so not), or talent for math (no again) or perhaps even a green thumb (not literally, you know what I mean). Or be in Mensa? Primary non-responder was never my goal.
The new drug is called Doxil; you can read all about it here http://www.doxil.com/optimize_treatment/managing_side_effect.jsp It is a good site. Reading about preventing side effects, that will be interesting for me, who is nearly always cold anyway. They give you a gift bag and the swag in this one was of a far superior quality to the first chemotherapy bag. Perhaps this bodes well. And it was all purple, a bonus for me, it is my favorite color. I never got into that Teal, well not too much. Purple and teal do go well together, however.
Seriously now:
The side effects are skin friction and mouth sores (yeech). I am supposed to avoid activities that cause friction, like typing, so I will keep it to a minimum. And I got home after 8 PM, so I was wiped out. And still had to be mommy and do reading and getting her ready for bed, and all that without whining (me, not her). We skipped the bath and today she was really rather rank. But I digress.
What I know is that it *might* work. It might not. I will have it every four weeks, for a while (a while is perhaps 5-6 times or possibly more). It does not have the automatic hair loss, so these salt and pepper curls might be around after all.
I do feel that I can try to fight and will keep an optimistic attitude, and use complementary modalities as well, acupuncture, polarity, Reiki, massage, all of it. And prayer.
Several of you have offered to come out and help with Sofie and me. Laurie, a dear friend who lives in Santa Cruz who I see rarely these days, will likely be first. The week she will be here, the second treatment, is unique, because this time Jamie and I have treatment and hence side effects the same day! She (Jamie) will be totally out of comission that week, so this help is invaluable. All offers for this assistance will be gladly accepted and I plan to start scheduling through the spring soon! I will be back in touch with those of you who offered. I am not supposed to do anything with heat (like using a toaster or the over or even a microwave). Which will make cooking kind of hard, so I guess those of my NC friends who offered food were spot on. Lots of little meals, frozen in plastic containers (I know, toxic to microwave, but I cannot lift the other type with tongs)will get us by.
I feel a bit more calm. I have a sense of my mortality being shorter than I might have planned, what with my hearty Ukrainian peasant stock and my grandfather living into his 80’s and all. I guess this means that planning for retirement might not be the priority it once was. But I do want to live to see my feisty daughter grow up. I want to be challenged by the drama of Middle School. I want to travel with her, to show her the parts of South Africa that captured my heart and soul the year she was born.
Jamie and I are talking a lot. We have to tell her about this in some way, and that will be hard, but I want her to understand that although Mommy is sick, she wants Sofie to feel safe and for us to have a long and loving relationship. Even if we argue over oatmeal vs. Cheerios at 7:45 in the morning. Jamie and I are talking about taking a “memorable” vacation this summer, and then perhaps next summer, going to S. Africa with her, even if she is only almost 8. If time is going to be shorter, I want to make it memorable for her. And for me.
Life feels like an even more precious daily gift, one that I continue to cherish. It has brought me closer to my friends, old (long term, not old) and new. It is teaching me humility and asking for help. It is going to be tough, the next few months, the next year. But I can do this, I think. I hope. I pray.
I am going upstairs to ice my feet and hands again. I went to work today and did pretty well, but worried all day about the friction thing. I have to worry about something, I guess.
Good night, all and much love.
First of all, thanks to all of you who have shared your thoughts, told me you are praying or meditating for me, sending me energy, light and hope. All gratefully accepted with gratitude.
Yesterday, I went to the oncologist. There are two “things”, lesions, on my liver. As far as they know, on not in. This is significant, evidently. This is considered a recurrence of the ovarian cancer, not a new cancer. Ovarian cancer is tricky, it can shed cells and sometimes they land on body parts like livers and the peritoneal cavity.
It turns out that I was a “primary non-responder” to the chemotherapy I had in the spring and summer. About 20% of the women who take it are. This is not the kind of special I wanted to be, for once, being in the other 80% would have been far more preferable. But special I am, so now they are trying a new drug. Why oh why could I have not been "special" in another way, gifted with a great singing voice (I am so not), or talent for math (no again) or perhaps even a green thumb (not literally, you know what I mean). Or be in Mensa? Primary non-responder was never my goal.
The new drug is called Doxil; you can read all about it here http://www.doxil.com/optimize_treatment/managing_side_effect.jsp It is a good site. Reading about preventing side effects, that will be interesting for me, who is nearly always cold anyway. They give you a gift bag and the swag in this one was of a far superior quality to the first chemotherapy bag. Perhaps this bodes well. And it was all purple, a bonus for me, it is my favorite color. I never got into that Teal, well not too much. Purple and teal do go well together, however.
Seriously now:
The side effects are skin friction and mouth sores (yeech). I am supposed to avoid activities that cause friction, like typing, so I will keep it to a minimum. And I got home after 8 PM, so I was wiped out. And still had to be mommy and do reading and getting her ready for bed, and all that without whining (me, not her). We skipped the bath and today she was really rather rank. But I digress.
What I know is that it *might* work. It might not. I will have it every four weeks, for a while (a while is perhaps 5-6 times or possibly more). It does not have the automatic hair loss, so these salt and pepper curls might be around after all.
I do feel that I can try to fight and will keep an optimistic attitude, and use complementary modalities as well, acupuncture, polarity, Reiki, massage, all of it. And prayer.
Several of you have offered to come out and help with Sofie and me. Laurie, a dear friend who lives in Santa Cruz who I see rarely these days, will likely be first. The week she will be here, the second treatment, is unique, because this time Jamie and I have treatment and hence side effects the same day! She (Jamie) will be totally out of comission that week, so this help is invaluable. All offers for this assistance will be gladly accepted and I plan to start scheduling through the spring soon! I will be back in touch with those of you who offered. I am not supposed to do anything with heat (like using a toaster or the over or even a microwave). Which will make cooking kind of hard, so I guess those of my NC friends who offered food were spot on. Lots of little meals, frozen in plastic containers (I know, toxic to microwave, but I cannot lift the other type with tongs)will get us by.
I feel a bit more calm. I have a sense of my mortality being shorter than I might have planned, what with my hearty Ukrainian peasant stock and my grandfather living into his 80’s and all. I guess this means that planning for retirement might not be the priority it once was. But I do want to live to see my feisty daughter grow up. I want to be challenged by the drama of Middle School. I want to travel with her, to show her the parts of South Africa that captured my heart and soul the year she was born.
Jamie and I are talking a lot. We have to tell her about this in some way, and that will be hard, but I want her to understand that although Mommy is sick, she wants Sofie to feel safe and for us to have a long and loving relationship. Even if we argue over oatmeal vs. Cheerios at 7:45 in the morning. Jamie and I are talking about taking a “memorable” vacation this summer, and then perhaps next summer, going to S. Africa with her, even if she is only almost 8. If time is going to be shorter, I want to make it memorable for her. And for me.
Life feels like an even more precious daily gift, one that I continue to cherish. It has brought me closer to my friends, old (long term, not old) and new. It is teaching me humility and asking for help. It is going to be tough, the next few months, the next year. But I can do this, I think. I hope. I pray.
I am going upstairs to ice my feet and hands again. I went to work today and did pretty well, but worried all day about the friction thing. I have to worry about something, I guess.
Good night, all and much love.
Tuesday, January 09, 2007
Dealing with the Fear
This afternoon, I see the oncologist. And (according to my nurse, Teri) start chemo again. Since last week when I arrived home and heard from the oncology folks about the rise in the blood level, and then having the CT scan, I have felt like I was moving in slow motion. I am walking and talking and yesterday, I even went to work for the full day, but it feels completely crazy to me, like a very bad movie or a dream I just cannot seem to wake up from.
I wrestle with thoughts of my imminent mortality. I try not to, but they are there, present with me every minute. When I cry, it is a kind of anticipatory grief I have over not living long enough to see Sofie in middle school or going off to college.
I know I need to have a positive attitude. It helped me a lot last time. But somehow, last time (was that only ten months ago?) it seemed manageable. It was "contained". I got the big drugs to keep it from spreading. But spread it did.
I am no fool, I know livers are pretty bad places for cancer. And I know that Western trained medical personnel, no matter how kind and well intentioned, are trained to fight with all the big guns, even if the battle is not particularly one they can win.
I am jumping ahead, I know I need more information. But I have always been pragmatic. And I have considered my mortality many times. I know I want to have quality of life, not additional months of being totally sick. My daughter deserves that. I deserve that.
Jamie is still in the middle of her treatments, next week is number four. We are trying to organize all this chaos so that she can have her needs attended to also, while she is trying to support me. She went with me for the CT scan. She is going to the doctor's today. Our lives are open books, more so than when we were together, I think.
The fear seizes me in the night, as I try to sleep. Last Friday, the day I found out about the lesions on my liver, the rain poured down. I listened and thought of the rain as my tears, since I could not let them flow, not that night. Fear is so powerful.
Today, it is crisp and cold, but clear. A nice January day. I was obsessed with trying to get my teeth cleaned, as you are not supposed to do that on chemo, and I just had not gotten around to getting it done in the past four months. But alas, nobody had an opening. I tried my old dentist here and then walked into two other offices, cold calling. Sympathetic, yes but no spaces. Who knew dentists and hygienists were so darn booked up?
I guess that pales in comparison to the other things I have to think about.
I have found myself (over the weekend) in purge mode. I look at the piles of miscellaneous paper and stuff I have accumulated and wonder why I bothered to keep it. I think the short range plan is to trash a lot of stuff over the next few months. Whether I have long to live or not, my office will be organized!
I will let you all know what is going on, as I know more. So many friends from here and across the country have offered to come, to help take care of me/us. I feel surrounded by light and goodness. But still terrified.
I wrestle with thoughts of my imminent mortality. I try not to, but they are there, present with me every minute. When I cry, it is a kind of anticipatory grief I have over not living long enough to see Sofie in middle school or going off to college.
I know I need to have a positive attitude. It helped me a lot last time. But somehow, last time (was that only ten months ago?) it seemed manageable. It was "contained". I got the big drugs to keep it from spreading. But spread it did.
I am no fool, I know livers are pretty bad places for cancer. And I know that Western trained medical personnel, no matter how kind and well intentioned, are trained to fight with all the big guns, even if the battle is not particularly one they can win.
I am jumping ahead, I know I need more information. But I have always been pragmatic. And I have considered my mortality many times. I know I want to have quality of life, not additional months of being totally sick. My daughter deserves that. I deserve that.
Jamie is still in the middle of her treatments, next week is number four. We are trying to organize all this chaos so that she can have her needs attended to also, while she is trying to support me. She went with me for the CT scan. She is going to the doctor's today. Our lives are open books, more so than when we were together, I think.
The fear seizes me in the night, as I try to sleep. Last Friday, the day I found out about the lesions on my liver, the rain poured down. I listened and thought of the rain as my tears, since I could not let them flow, not that night. Fear is so powerful.
Today, it is crisp and cold, but clear. A nice January day. I was obsessed with trying to get my teeth cleaned, as you are not supposed to do that on chemo, and I just had not gotten around to getting it done in the past four months. But alas, nobody had an opening. I tried my old dentist here and then walked into two other offices, cold calling. Sympathetic, yes but no spaces. Who knew dentists and hygienists were so darn booked up?
I guess that pales in comparison to the other things I have to think about.
I have found myself (over the weekend) in purge mode. I look at the piles of miscellaneous paper and stuff I have accumulated and wonder why I bothered to keep it. I think the short range plan is to trash a lot of stuff over the next few months. Whether I have long to live or not, my office will be organized!
I will let you all know what is going on, as I know more. So many friends from here and across the country have offered to come, to help take care of me/us. I feel surrounded by light and goodness. But still terrified.
Saturday, January 06, 2007
Catching up on the Holidays
Dateline: December 27th 2006
In the East Bay
We stayed at Chez Hampel last night, cozy in the Princess Bed and then had a lovely plan to go to Lynn and Lou’s for breakfast and then get our nails and toes done, just like in the before times. But when we went outside, someone had pretty much ripped off the entire bumper of my crappy rental car (a silver Pontiac G-6). I was totally legally parked, the car was in the street, with the clunky bumper thing hanging from a thread. I started placing the calls to the rental place. There was literally minimal to no food in Brenda’s home, she had been away since before Thanksgiving. Hence the plan to get breakfast then shop for her return tomorrow night.
I called a friend of ours, Jessica Lee, “Nola’s Mom” who rescued Sofie, took the girls to lunch (Sofie had been given several crackers, some peanut butter and my profound apologies) and took the kids to Compadres for Mexican food. Jesi is one of those folks that I feel connected too, even after long periods of separation. The girls were the same. When I finally arrived (the replacement car logistics took three hours), the girls were finishing up. I had a little soup and I noticed that Ms. Sofie seemed to be drinking a darker drink than her usual Sprite. Jesi said that when asked what she wanted, she ordered a Diet Coke, clear as a bell, as if she always had that. She knows she is not allowed to have more than a sip of mine until she is a teenager. Sneaky girl. But her post-nausea experience with Coke obviously took over and now she is hooked.
We ended up going to the Oakland Zoo for rides, then as it got chillier, went to Jesi and Jon’s home, where we had wine (just the adults) and the girls played together as if they did it every week. Then Jon came home, we had pizza and then finally, we left for the night. It is so lovely to see people and just hang out.
Dateline: December 25th 2006
Holidaze and gifts
Sofie was surrounded by presents this am, from the great personalized stationery that my sister created for her, to the tons of books and Leap Pad stuff from my brother and his family. Santa was very, very good to her this year. You may not know this, but special arrangements were made for Santa to visit Jamie’s condo earlier in the week before we left for CA to drop off some presents there, including her very first (but surely not last) video game. Sofie gets the Hanukkah/Christmas thing. Oh yeah. Next year: cut back some on the scope of gifts. And give stuff away. Something she does not yet do well.
Dateline: December 23rd 2006
A very momentous occassion
Last night, our second night here, Sofie and I were invited to Naomi’s house for dinner, then off to Teacher Lydia’s (her former music teacher in the toddler years) for an evening of caroling. Neither Sofie nor Naomi showed much interest in eating and the food (fish and veggies) was delicious as always at Chez Churchill, so we ate and let them essentially eat bread. Sofie had at least four or five pieces. We had been kind of grazing all day, and I figured her body was possibly still on East Coast time.
So off we went to the party. Lydia and Gordon’s daughter, Anjy, was a baby in a baby carrier last time I saw her, now she is a lovely little girl, with long flowing hair. The girls played, ate cookies without much supervision (guilty!) and then we came back to Joanna’s where they said they were starving. So a late night bowl of the mac and cheese (the kind with the bright orange glow) and then we packed up and headed to Palo Alto, late. Sofie complained that her stomach hurt just as we were leaving, but she often says that at the end of a day, to prolong the going to bed stuff. I promised a tums when we got to Grandma’s.
So, long story short, we got there, she got into PJ’s and she drank a part of a glass of milk at which point, she projectile vomited all over the dining room table and a little on my shoes.
Poor kid, in the entire time we have been together, she has never vomited! Not on my watch and not any other time that I have heard about. So it was pretty scary for her and she cried and cried. I cleaned her up, took her to bed and within the hour she was up again, barfing. And so it went, three more times that night. The next day, she refused all food and water, fearful that she would vomit again. I finally bribed her with Coca Cola and that turned the table, she drank three small cups and ate crackers.
While I was laying in bed next to her (by the way, all barfing subsequent to the “big barf” was done in the bathroom!) I calculated that it had been four years, eight months and three days since Sofie had arrived in our home in CA. That has to be some kind of record for a child not throwing up, right? I meant to check to see if this was some sort of document-worthy record, but I never got around to it.
Dateline: December 21st 2006
How to over-pack and travel across country without lifting more than ten pounds
So earlier this week, on Monday, I had gallbladder surgery, it was uneventful. The one question I had asked the doctor at the pre-op visit was if it were contraindicated to travel on a plane the third day post surgery. He looked a bit startled, we discussed prevention of embolism, and then he said “but you probably won’t be very comfortable”. Never one to let that stand in my way, we departed to the airport with Jamie driving and let the porters at curbside check do their thing. So what if it were $2.00 a bag, it was well worth it.
Upon sitting on our plane to Dallas, I realized something shocking: my cell phone (which I was looking for to turn off for the flight) was not in my bag. I remembered immediately the course of events that am: Sofie answered it while I was in the shower. I had placed it on the dining room table to pop in my bag but I never realized it was not there. No cell phone!!! Shades of pre-1998. But I would have to deal with that, later.
In San Francisco, another story. No porters. Non visible and the flight was over an hour late from Dallas too. I finally got someone at American Airlines to take pity on my disabled self and get me a nice porter (who I tipped very generously) and he put all the bags on the wheeled cart, and pushed it to the Air Bart or whatever they now have at SFO to get you to the car rental place. Sofie was a big girl and was responsible for her backpack and wheeled case.
Then, rationalizing that it was not truly lifting if I was just pushing, I pushed the cart off the elevator when we arrived, to Budget. My car was all pre-arranged, I just explained to the (very) harried Budget folks that I would need help with getting all the bags into the car. A nice woman from Avis overheard me and simply stepped up, offered to help and took it over. Bless her. I feel badly that I did not get her name, she deserves a formal note to her bosses. Nice to know that there are still wonderful folks out there.
We headed directly to the Wexler household, as I had invited us for Hanukkah dinner. It was lovely, Tamar (age 8) and Sofie played well together, the big kids (Naomi, a stunning almost 17 and Nathan, 13.5) are great and it is always a joy to spend time with Becky and Wex. It was pouring out, they are in Brisbane, so they graciously offered to let us crash for the night, which was great, since I was tired.
The next day, we headed to Palo Alto.
In the East Bay
We stayed at Chez Hampel last night, cozy in the Princess Bed and then had a lovely plan to go to Lynn and Lou’s for breakfast and then get our nails and toes done, just like in the before times. But when we went outside, someone had pretty much ripped off the entire bumper of my crappy rental car (a silver Pontiac G-6). I was totally legally parked, the car was in the street, with the clunky bumper thing hanging from a thread. I started placing the calls to the rental place. There was literally minimal to no food in Brenda’s home, she had been away since before Thanksgiving. Hence the plan to get breakfast then shop for her return tomorrow night.
I called a friend of ours, Jessica Lee, “Nola’s Mom” who rescued Sofie, took the girls to lunch (Sofie had been given several crackers, some peanut butter and my profound apologies) and took the kids to Compadres for Mexican food. Jesi is one of those folks that I feel connected too, even after long periods of separation. The girls were the same. When I finally arrived (the replacement car logistics took three hours), the girls were finishing up. I had a little soup and I noticed that Ms. Sofie seemed to be drinking a darker drink than her usual Sprite. Jesi said that when asked what she wanted, she ordered a Diet Coke, clear as a bell, as if she always had that. She knows she is not allowed to have more than a sip of mine until she is a teenager. Sneaky girl. But her post-nausea experience with Coke obviously took over and now she is hooked.
We ended up going to the Oakland Zoo for rides, then as it got chillier, went to Jesi and Jon’s home, where we had wine (just the adults) and the girls played together as if they did it every week. Then Jon came home, we had pizza and then finally, we left for the night. It is so lovely to see people and just hang out.
Dateline: December 25th 2006
Holidaze and gifts
Sofie was surrounded by presents this am, from the great personalized stationery that my sister created for her, to the tons of books and Leap Pad stuff from my brother and his family. Santa was very, very good to her this year. You may not know this, but special arrangements were made for Santa to visit Jamie’s condo earlier in the week before we left for CA to drop off some presents there, including her very first (but surely not last) video game. Sofie gets the Hanukkah/Christmas thing. Oh yeah. Next year: cut back some on the scope of gifts. And give stuff away. Something she does not yet do well.
Dateline: December 23rd 2006
A very momentous occassion
Last night, our second night here, Sofie and I were invited to Naomi’s house for dinner, then off to Teacher Lydia’s (her former music teacher in the toddler years) for an evening of caroling. Neither Sofie nor Naomi showed much interest in eating and the food (fish and veggies) was delicious as always at Chez Churchill, so we ate and let them essentially eat bread. Sofie had at least four or five pieces. We had been kind of grazing all day, and I figured her body was possibly still on East Coast time.
So off we went to the party. Lydia and Gordon’s daughter, Anjy, was a baby in a baby carrier last time I saw her, now she is a lovely little girl, with long flowing hair. The girls played, ate cookies without much supervision (guilty!) and then we came back to Joanna’s where they said they were starving. So a late night bowl of the mac and cheese (the kind with the bright orange glow) and then we packed up and headed to Palo Alto, late. Sofie complained that her stomach hurt just as we were leaving, but she often says that at the end of a day, to prolong the going to bed stuff. I promised a tums when we got to Grandma’s.
So, long story short, we got there, she got into PJ’s and she drank a part of a glass of milk at which point, she projectile vomited all over the dining room table and a little on my shoes.
Poor kid, in the entire time we have been together, she has never vomited! Not on my watch and not any other time that I have heard about. So it was pretty scary for her and she cried and cried. I cleaned her up, took her to bed and within the hour she was up again, barfing. And so it went, three more times that night. The next day, she refused all food and water, fearful that she would vomit again. I finally bribed her with Coca Cola and that turned the table, she drank three small cups and ate crackers.
While I was laying in bed next to her (by the way, all barfing subsequent to the “big barf” was done in the bathroom!) I calculated that it had been four years, eight months and three days since Sofie had arrived in our home in CA. That has to be some kind of record for a child not throwing up, right? I meant to check to see if this was some sort of document-worthy record, but I never got around to it.
Dateline: December 21st 2006
How to over-pack and travel across country without lifting more than ten pounds
So earlier this week, on Monday, I had gallbladder surgery, it was uneventful. The one question I had asked the doctor at the pre-op visit was if it were contraindicated to travel on a plane the third day post surgery. He looked a bit startled, we discussed prevention of embolism, and then he said “but you probably won’t be very comfortable”. Never one to let that stand in my way, we departed to the airport with Jamie driving and let the porters at curbside check do their thing. So what if it were $2.00 a bag, it was well worth it.
Upon sitting on our plane to Dallas, I realized something shocking: my cell phone (which I was looking for to turn off for the flight) was not in my bag. I remembered immediately the course of events that am: Sofie answered it while I was in the shower. I had placed it on the dining room table to pop in my bag but I never realized it was not there. No cell phone!!! Shades of pre-1998. But I would have to deal with that, later.
In San Francisco, another story. No porters. Non visible and the flight was over an hour late from Dallas too. I finally got someone at American Airlines to take pity on my disabled self and get me a nice porter (who I tipped very generously) and he put all the bags on the wheeled cart, and pushed it to the Air Bart or whatever they now have at SFO to get you to the car rental place. Sofie was a big girl and was responsible for her backpack and wheeled case.
Then, rationalizing that it was not truly lifting if I was just pushing, I pushed the cart off the elevator when we arrived, to Budget. My car was all pre-arranged, I just explained to the (very) harried Budget folks that I would need help with getting all the bags into the car. A nice woman from Avis overheard me and simply stepped up, offered to help and took it over. Bless her. I feel badly that I did not get her name, she deserves a formal note to her bosses. Nice to know that there are still wonderful folks out there.
We headed directly to the Wexler household, as I had invited us for Hanukkah dinner. It was lovely, Tamar (age 8) and Sofie played well together, the big kids (Naomi, a stunning almost 17 and Nathan, 13.5) are great and it is always a joy to spend time with Becky and Wex. It was pouring out, they are in Brisbane, so they graciously offered to let us crash for the night, which was great, since I was tired.
The next day, we headed to Palo Alto.
Tuesday, December 19, 2006
Sofie's Basketball Debut
Proud mom that I am, I had to share these photos. Last week was Morehead School Spirit Week, with a grand finale on Friday - a basketball game between the teachers and the kids. Sofie got picked from her class. Not based on any basketball phenom stuff, she just got picked. But it was a big deal for the kids. First, you have to put in all in context, so here is the line up for School Spirit Week:
Monday, red/white and blue day
Tuesday, mismatched shoe day (she wore two different rainboots)
Wednesday, Wacky Wear Day (she wore shorts on top of her pants and shirts layered)
Thursday, Team Jersey Day (wearing the orange shirt of the Dutch Futbol Team from the World Cup, betcha that was classy for a first grader!)
Friday, School T-shirt day concluded with the students vs. the teachers basketball game.
She had practiced all week. Never mind that she is wearing the wrong shoes, she has all the right moves and got a sports injury (her first) to boot! Recored in the photos.
Jamie was able to actually go and watch, I was doing my last day at work before having the gallbladder surgery yesterday, so these are Jamie’s photos. Sometimes I really miss these once in a lifetime mother moments.
Enjoy. She is not that good at making shots yet, but she is very enthusiastic. The kids won, by the way. Yeah, right. And the elves brought some of her gifts to Durham early since Santa knew she was traveling. It is lovely to believe in all that.
http://new.photos.yahoo.com/jlamkin/album/576460762375571867
For more on her Santa experience, read Jamie's blog entry:
http://complex-one.blogspot.com/
Monday, red/white and blue day
Tuesday, mismatched shoe day (she wore two different rainboots)
Wednesday, Wacky Wear Day (she wore shorts on top of her pants and shirts layered)
Thursday, Team Jersey Day (wearing the orange shirt of the Dutch Futbol Team from the World Cup, betcha that was classy for a first grader!)
Friday, School T-shirt day concluded with the students vs. the teachers basketball game.
She had practiced all week. Never mind that she is wearing the wrong shoes, she has all the right moves and got a sports injury (her first) to boot! Recored in the photos.
Jamie was able to actually go and watch, I was doing my last day at work before having the gallbladder surgery yesterday, so these are Jamie’s photos. Sometimes I really miss these once in a lifetime mother moments.
Enjoy. She is not that good at making shots yet, but she is very enthusiastic. The kids won, by the way. Yeah, right. And the elves brought some of her gifts to Durham early since Santa knew she was traveling. It is lovely to believe in all that.
http://new.photos.yahoo.com/jlamkin/album/576460762375571867
For more on her Santa experience, read Jamie's blog entry:
http://complex-one.blogspot.com/
Nip and Tuck
If I were talking plastics, you would probably think “enough already” with the surgery. But alas, it was much more mundane. Yesterday, knowing full well that I had to get on a plane on Thursday (essentially three days later), I had my gall bladder out.
I never had a gallbladder “issue” until after the chemo, when I experienced a big flare up in early October. Wanting nothing to do with doctors of any sort, I tried to will it away. No luck. I was sent for the requisite ultrasound and told that although it was not “acute” I had best see a surgeon. Still in fierce denial, I saw two, hoping that one might say that if I changed my diet a bit, it would go away. No such luck. Both advised surgery sooner rather than later. After a post Thanksgiving flare up, I relented.
My surgeon is a busy guy so it was a scheduling thing for him. The best I could get was yesterday. So my dear and faithful friend Betty picked me up at 5:15 and we were there well ahead of my 6 am call.
After cancer surgery and the neck thing a bunch of years ago, the gallbladder surgery seemed like a big whoop. Except the anesthesiologist had to go over all the risks of surgery and anesthesia, including “stroke, heart failure and death”. I know it is his job, but until then, I was hardly even anxious. Mostly I was concerned that I be able to get on the damn plane on Thursday. I had made my reservations (with miles!) eight months ago, and nothing was keeping me from this trip.
Long story short, I was home by 1 pm, it truly is amazing how the human body, not to mention the medical system, works. With some vicodin to offset the soreness, I took a looong nap. Then was awake for a short visit from Sofie at the end of her day, so Jamie could get my prescription to fill it. The pharmacists must think we are some kind of weird family, between us both needing chemo related drugs and vast quantities of pain killers in a short amount of time.
I had rented a movie I had already seen so that I would not have to work too hard to enjoy it…I popped in The Devil Wears Prada at about 7:30 so I could stay awake long enough that I would not wake up at 3 am wide awake from sleeping too early in the night.
It worked, I fell asleep about 9:45 and slept nearly 11 hours. Kind of like two or three nights in my sordid sleepless past!
Today, I am sore but walking, talking and emailing. I have to go back to packing shortly as that was the goal for the day.
I am not usually one for New Year’s resolutions, but I think this time I will resolve *not* to have any surgeries of any sort in 2007. That seems reasonable!
Happy holidays to all. I tried to get out a bunch of cards, but if I missed you this year, please know it was likely due to the craziness of being interrupted by the surgery and the getting ready for the surgery. And consider yourself greeted!
I never had a gallbladder “issue” until after the chemo, when I experienced a big flare up in early October. Wanting nothing to do with doctors of any sort, I tried to will it away. No luck. I was sent for the requisite ultrasound and told that although it was not “acute” I had best see a surgeon. Still in fierce denial, I saw two, hoping that one might say that if I changed my diet a bit, it would go away. No such luck. Both advised surgery sooner rather than later. After a post Thanksgiving flare up, I relented.
My surgeon is a busy guy so it was a scheduling thing for him. The best I could get was yesterday. So my dear and faithful friend Betty picked me up at 5:15 and we were there well ahead of my 6 am call.
After cancer surgery and the neck thing a bunch of years ago, the gallbladder surgery seemed like a big whoop. Except the anesthesiologist had to go over all the risks of surgery and anesthesia, including “stroke, heart failure and death”. I know it is his job, but until then, I was hardly even anxious. Mostly I was concerned that I be able to get on the damn plane on Thursday. I had made my reservations (with miles!) eight months ago, and nothing was keeping me from this trip.
Long story short, I was home by 1 pm, it truly is amazing how the human body, not to mention the medical system, works. With some vicodin to offset the soreness, I took a looong nap. Then was awake for a short visit from Sofie at the end of her day, so Jamie could get my prescription to fill it. The pharmacists must think we are some kind of weird family, between us both needing chemo related drugs and vast quantities of pain killers in a short amount of time.
I had rented a movie I had already seen so that I would not have to work too hard to enjoy it…I popped in The Devil Wears Prada at about 7:30 so I could stay awake long enough that I would not wake up at 3 am wide awake from sleeping too early in the night.
It worked, I fell asleep about 9:45 and slept nearly 11 hours. Kind of like two or three nights in my sordid sleepless past!
Today, I am sore but walking, talking and emailing. I have to go back to packing shortly as that was the goal for the day.
I am not usually one for New Year’s resolutions, but I think this time I will resolve *not* to have any surgeries of any sort in 2007. That seems reasonable!
Happy holidays to all. I tried to get out a bunch of cards, but if I missed you this year, please know it was likely due to the craziness of being interrupted by the surgery and the getting ready for the surgery. And consider yourself greeted!
Sunday, December 10, 2006
Let There Be Light(s)
Hanukkah begins at the end of this week. And as you might imagine, with Christmas only a ten more days after the start of Hanukkah, the community is already ablaze with lights of all sorts, including our neighbor's home next door.
The week they put up their lights on the trees outside, the interogation began: "mom, why don't we have lights? Why only candles on Hanukkah? Grandma in California has a tree, why don't we have a tree? ". That sort of thing.
I grew up with Christmas trees inside, but never had the outside light experience. Maybe that was even too much for my mom (culturally Jewish, if not participating). It was always strange to know I was Jewish, but we had a tree and "celebrated" Chistmas. Here we have been attending the Eno River Unitarian Universalist Fellowship (ERUUF for short), and mostly I feel very positive about it. Both the "old minister" (Mary, the assistant minister) and the newly installed minister are terrific and I feel a sense of peace whenever I enter the sanctuary. But I always feel a bit like a fish out of water, too. Because as generalist as they try to be, and as accepting of all people and all faiths as I know they are, it is still referred to as a "church" by many and feels, well, not Jewish. That is not a criticism, it is just a statement of fact.
So when the holidays roll around (the serious fall ones or this time of year, for Hanukkah), I try to immerse Sofie in all things Jewish. We have a stack of books about Hanukkah and lighting candles and we have played several rounds of driedel, but this year, she started asking me "why couldn't we have lights outside, since although she was Jewish, she was also Unitarian". I finally decided that lights, if they were that important to her, we not gong to destroy her or my sense of identity, not really. Then the tasteful side of me wanted to encourage her to do all white lights ("boring") or white and blue (a gesture, however lame, to Hanukkah). Also rejected, she wanted colors.
So we went off to Target, my source for all things, and I was befuddled at the choices! Strands ranging from a few feet to many yards, twinkle type or not, indoor for sure or indoor/outdoor. And how exactly was I to find the extension cord that would run all the way to the side of the house where the only (known) outlet was?
After many questions posed and answered by the distracted and overwhelmed looking sales associate at Target, I made my choices and we left. And went home to attempt to decorate the house (still striving for tasteful). We have two little evergreen type trees that our friend Beth used to stage her house a few months ago, then gave to us. Perfect for my first foray into holiday lighting!
A bit later, as she plugged in the lights, she just glowed. These are her contribution to our house, her responsibility to turn on and off in the morning. And she can look out from her bedroom window at nightime and see them. All in all, the light in her eyes was more significant to me, but I got it.
The lights are part of her experience. And now they are part of mine. On Friday, I am taking our Menorrah to her classroom with another mom and explaining Hanukkah to the first through third graders, complete with some jelly donuts and driedels to play (and gelt, of course). Me, the girl from Queens who did not light a menorrah until I was in my forties. And Sofie and I are practising, so she can say the prayer with me.
We are kind of making it up as we go along. Some nights we join hands and say a little blessing before we eat. This is something our friend Paul did when he was with us in the bay area, and I like to do with her sometimes. Tonight, visiting new friends (from ERUUF) and having a spontaneous supper with them, Sofie suggested we say a blessing. And she did! I was totally charmed and also aware that she is beginning to develop her own sense of the sacred. And she is only six.
The spirit of the holidays, all of them, is everywhere. You just have to look.
The week they put up their lights on the trees outside, the interogation began: "mom, why don't we have lights? Why only candles on Hanukkah? Grandma in California has a tree, why don't we have a tree? ". That sort of thing.
I grew up with Christmas trees inside, but never had the outside light experience. Maybe that was even too much for my mom (culturally Jewish, if not participating). It was always strange to know I was Jewish, but we had a tree and "celebrated" Chistmas. Here we have been attending the Eno River Unitarian Universalist Fellowship (ERUUF for short), and mostly I feel very positive about it. Both the "old minister" (Mary, the assistant minister) and the newly installed minister are terrific and I feel a sense of peace whenever I enter the sanctuary. But I always feel a bit like a fish out of water, too. Because as generalist as they try to be, and as accepting of all people and all faiths as I know they are, it is still referred to as a "church" by many and feels, well, not Jewish. That is not a criticism, it is just a statement of fact.
So when the holidays roll around (the serious fall ones or this time of year, for Hanukkah), I try to immerse Sofie in all things Jewish. We have a stack of books about Hanukkah and lighting candles and we have played several rounds of driedel, but this year, she started asking me "why couldn't we have lights outside, since although she was Jewish, she was also Unitarian". I finally decided that lights, if they were that important to her, we not gong to destroy her or my sense of identity, not really. Then the tasteful side of me wanted to encourage her to do all white lights ("boring") or white and blue (a gesture, however lame, to Hanukkah). Also rejected, she wanted colors.
So we went off to Target, my source for all things, and I was befuddled at the choices! Strands ranging from a few feet to many yards, twinkle type or not, indoor for sure or indoor/outdoor. And how exactly was I to find the extension cord that would run all the way to the side of the house where the only (known) outlet was?
After many questions posed and answered by the distracted and overwhelmed looking sales associate at Target, I made my choices and we left. And went home to attempt to decorate the house (still striving for tasteful). We have two little evergreen type trees that our friend Beth used to stage her house a few months ago, then gave to us. Perfect for my first foray into holiday lighting!
A bit later, as she plugged in the lights, she just glowed. These are her contribution to our house, her responsibility to turn on and off in the morning. And she can look out from her bedroom window at nightime and see them. All in all, the light in her eyes was more significant to me, but I got it.
The lights are part of her experience. And now they are part of mine. On Friday, I am taking our Menorrah to her classroom with another mom and explaining Hanukkah to the first through third graders, complete with some jelly donuts and driedels to play (and gelt, of course). Me, the girl from Queens who did not light a menorrah until I was in my forties. And Sofie and I are practising, so she can say the prayer with me.
We are kind of making it up as we go along. Some nights we join hands and say a little blessing before we eat. This is something our friend Paul did when he was with us in the bay area, and I like to do with her sometimes. Tonight, visiting new friends (from ERUUF) and having a spontaneous supper with them, Sofie suggested we say a blessing. And she did! I was totally charmed and also aware that she is beginning to develop her own sense of the sacred. And she is only six.
The spirit of the holidays, all of them, is everywhere. You just have to look.
Saturday, December 02, 2006
A Day in the Park
Had to try to share these cuties of Sofie, taken by Jamie today. I was home, loving the alone adult time, spending time with my friend Betty, with whom I enjoy just hanging out, running errands. Finally got the Hanukkah gifts wrapped, and started the holiday cards...but I am only up to the E's. I should start these in October.
Speaking of starting early! I got her camp applications for summer 2007 in the mail and another via email today. Hard to plan for June, July and August on the 2nd of December, but if you snooze, you lose. And she for certain wants to go to Camp Riverlea again, she loved that the most last year.
Sofie's pigtail hair is a great way to avoid the hairbrushing it takes to untangle the knots. The surface hair is smooth but underneath, it could be a total bird's nest. Poor baby, it does seem to hurt to brush it all out, but we routinely go through this torture on an every other day basis at least. I told her it happened to me when I was a little girl. That seems in hindsight to be one of those cruel mom things, as if doing it is justified by having had it done to me. The things that escape my mouth sometimes!
Speaking of starting early! I got her camp applications for summer 2007 in the mail and another via email today. Hard to plan for June, July and August on the 2nd of December, but if you snooze, you lose. And she for certain wants to go to Camp Riverlea again, she loved that the most last year.
Sofie's pigtail hair is a great way to avoid the hairbrushing it takes to untangle the knots. The surface hair is smooth but underneath, it could be a total bird's nest. Poor baby, it does seem to hurt to brush it all out, but we routinely go through this torture on an every other day basis at least. I told her it happened to me when I was a little girl. That seems in hindsight to be one of those cruel mom things, as if doing it is justified by having had it done to me. The things that escape my mouth sometimes!
The Question About the Hair
So to all of you who have asked about "the hair", here is an old shot, when it got buzzed! It is quite similar in length to this today. Maybe a tad longer, but not much. Maybe a tad more silver! (I am six months older than in this shot). Remains to be seen if it will get curly as everyone told me it might.
This was taken when I was at the hair buzzing/wig place, it is Sofie's official babushka'ed shot!
This was taken when I was at the hair buzzing/wig place, it is Sofie's official babushka'ed shot!
Friday, December 01, 2006
Remembering the Lights
Today is World AIDS Day and I did not have a place to be. All day, I had the strange vague feeling that I was supposed to be somewhere. Unsettling, until late this evening, when I finally left my office and the relentless onslaught of e-mail I battled all day, and then, while I was walking to the parking deck, I got it. The lights of the cars under the bridge to the deck suddenly reminded me of the flickering candles of so many AIDS vigils and marches. And then I remembered that I was supposed to be somewhere like the National AIDS Memorial Grove, surrounded by others, to remember.
But the Grove is thousands of miles away, and so I let the car headlights be my candles tonight. The memories came flooding back, sweet, painful, sad. Powerful. My life these days has very little connection to the life I had in the HIV community for over twenty years. But today, something much bigger than the day to day schedule took over, and I was able to stop, to meditate on the lessons learned, the friends lost and those still living with HIV.
My life has changed so much because of HIV. I know without any doubt, that I was better able to deal with my own cancer because of so many of the people I met along the way, doing battle with an illness for which cure was not an option.
Today, I had to schedule gallbladder surgery for a few weeks from today. I did it with all the fanfare of making an appointment to get my teeth cleaned. Life has certainly shown me some perspective. And it started a long time ago, in the beginning of the epidemic, in my thirties, when I was not supposed to be losing my friends. I grew up with HIV in some ways, and I know I live my life differently because of it.Tofeel like I am supposed to be somewhere. This feeling was with me, vaguely, from the time I woke up, all day, and continued as I left my office late this evening (well, later than usual) and walked to my parking deck. The lights from the cars under the bridge to the deck reminded me, suddenly, of candles. And I started to remember so many of the bright lights in my life, now gone.
Candles have lots of associations, from birthdays to Hanukkah, but on this day, the thing I remembered the most was the marches. The AIDS vigils, those candles flickering, struggling against the fog and wind of chilly San Francicsco nights. And the sense of solidarity standing among strangers and friends, silently, remembering, praying, crying, wanting.
I know there were World AIDS Day things happening on campus at UNC today, but I had things to do and well, that is just not a part of my day to day life anymore. It was for over two decades, so the lack or loss of it still feels odd. Like I have a dual sense of being here and being at the National AIDS Memorial Grove or somewhere else, producing an event or doing something in memory of all the friends who died. And in celebration of those still living.
So tonight, instead of the flickering candles, the lights around me had to do. I meditated on those I love, still living with HIV. And those I don't even know, around the world, dying from a disease that should have been fixed by now. I listened to W today at the White House "commemoration" of World AIDS Day, and once again, he just sounded like an idiot. He should not be allowed to speak on occassions like this, his lack of any grasp of the real issues, the scope of the world pandemic make anything he attempts to utter sound trivial and stupid. And it is anything but.
But the Grove is thousands of miles away, and so I let the car headlights be my candles tonight. The memories came flooding back, sweet, painful, sad. Powerful. My life these days has very little connection to the life I had in the HIV community for over twenty years. But today, something much bigger than the day to day schedule took over, and I was able to stop, to meditate on the lessons learned, the friends lost and those still living with HIV.
My life has changed so much because of HIV. I know without any doubt, that I was better able to deal with my own cancer because of so many of the people I met along the way, doing battle with an illness for which cure was not an option.
Today, I had to schedule gallbladder surgery for a few weeks from today. I did it with all the fanfare of making an appointment to get my teeth cleaned. Life has certainly shown me some perspective. And it started a long time ago, in the beginning of the epidemic, in my thirties, when I was not supposed to be losing my friends. I grew up with HIV in some ways, and I know I live my life differently because of it.Tofeel like I am supposed to be somewhere. This feeling was with me, vaguely, from the time I woke up, all day, and continued as I left my office late this evening (well, later than usual) and walked to my parking deck. The lights from the cars under the bridge to the deck reminded me, suddenly, of candles. And I started to remember so many of the bright lights in my life, now gone.
Candles have lots of associations, from birthdays to Hanukkah, but on this day, the thing I remembered the most was the marches. The AIDS vigils, those candles flickering, struggling against the fog and wind of chilly San Francicsco nights. And the sense of solidarity standing among strangers and friends, silently, remembering, praying, crying, wanting.
I know there were World AIDS Day things happening on campus at UNC today, but I had things to do and well, that is just not a part of my day to day life anymore. It was for over two decades, so the lack or loss of it still feels odd. Like I have a dual sense of being here and being at the National AIDS Memorial Grove or somewhere else, producing an event or doing something in memory of all the friends who died. And in celebration of those still living.
So tonight, instead of the flickering candles, the lights around me had to do. I meditated on those I love, still living with HIV. And those I don't even know, around the world, dying from a disease that should have been fixed by now. I listened to W today at the White House "commemoration" of World AIDS Day, and once again, he just sounded like an idiot. He should not be allowed to speak on occassions like this, his lack of any grasp of the real issues, the scope of the world pandemic make anything he attempts to utter sound trivial and stupid. And it is anything but.
Sunday, November 26, 2006
Surrounded by posse love photo gallery
Alan Lessik (in his famous babushka, the one that started it all)
Kimo, looking none too happy to be so shorn and babushka'ed.
Eileen's famous "kinda short" haircut of solidarity.
Lisa's "Brooklyn Babushka'ed look.
The girl posse as we call ourselves, was with me for the whole journey, via e-mails and visits when could. This baldy head shot is from June 2006. From left to right, around me, are Pam, Brenda and Lisa. Eileen and Pat were our hosts that evening. Seems a long time ago now! Obviously, I should have worked on a fake tan for that white head.
I will attempt to post some more later, must go cook now!
More fashionable shots
This one is for mom, who so wanted Sofie to wear those adorable Hanna Anderson dresses. This one Sofie calls her candycane dress. The accessorizing was her idea, I swear!!!
Starring Sofie
I wanted to share a few photos of the girl, since she is getting older and taller by the moment. She is still not showing any of that toothy stuff of the first and second grade. But any time now, I bet!
Sofie painted as a tiger, one of her favorite animals. This one was done by a professional, not her mom! This is from a few months back, in spring.
Comfort Food
Today, I am preparing to have a small party to thank those that helped me on the road to recovery. Many will be missing at the table, since they live so far away. Carrie and Sue, mentioned in the last post. Alan, who called me weekly from CA or wherever he was at that moment, to check in and remind me I was loved. Susan Q and others who just called, often getting the voicemail, to say hi. And my family who worried I was making it all too pretty, not telling the truth about how I felt who called or emailed to express that worry.
I am making mostly “comfort food”, chicken pot pie, pumpkin bread, veggie chili and cornbread. Food that feeds the soul. I expected it to be a cold, damp day when I planned the menu, as Thanksgiving was. Instead, it is brilliant and sunny, about 70 degrees. But perhaps by the end of the day, the warm food, hot cider and candles will seem appropriate.
I need to do these things in this house, to try to work out the things that still make it feel not quite like home. The house itself is looking good, but I still find myself missing my “old” house, or some of those features, most specifically: the storage space and the fireplace! But this is our house now, and it does mostly work for us. In a few years, I imagine that Sofie will need more space, either a larger bedroom so she can have her own desk or some other space in the downstairs, carved out for her use. The large “playroom” space here is very underutilized. I keep imagining that I might have one of those home show people from HGTV come and tell me what to do to make it all work better. You would think I would know, since I have watched enough of those shows. My big fantasy is that I have the folks from Mission Organization, Design on a Dime, Curb Appeal and who knows what else all meet, fix it all and leave me with my Barbie Dream house. Oh well, I should be happy that we have a house and work from there.
I still find myself keeping stuff I don’t use much or need. I use my alone time to organize my closets and things. Other people would go out, shop, etc. Not me, not this year. This is the year of the nesting. Finally making peace with where I am, the next step is to make the where work better!
The weekend went by too fast. I had Sofie until Friday PM, after we went to a movie “Happy Feet” she went to stay with Jamie for two days, until later this afternoon. I also have a new, or rather returned family member: we are trying to reunite Boone, the boy cat, with his sister Gracie. The poor cats have been way too traumatized by all the moves, separations, etc. So far, Boone has been hiding non-stop, but I am hopeful that in a few days, he will realize he is “home” again, and safe. That is truly what it is all about, not the decorating.
Oh, a note, before I close, on the hair, since many have asked. It is growing back, in kind of a silver mixed with the old brown. The texture right now, with the very short hair, is kind of pettable, like a cat! About three weeks ago, I went to work wearing the wig. I got hot (it was one of those nearly 80 degree days) and I took off the wig for a bit to cool down. And never put it back on. I realized that day, I was done, my short hair is a symbol of the survival and besides, it looks kind of cool. So now, with my eyebrows back, and my very short hair, shorter even than the buzzed hair, I am back in the world, wigless and proud! And sometimes, cold. I was sorry not to see the hair come back in thick (dark) curls, but it remains to be seen how thick it will actually be and how silver. I might just not color it again, but don't quote me on that. I have had nothing but positive feedback and that has stroked my ego, but also reminded me that I am strong, and I did survive this whole period really well.
I am making mostly “comfort food”, chicken pot pie, pumpkin bread, veggie chili and cornbread. Food that feeds the soul. I expected it to be a cold, damp day when I planned the menu, as Thanksgiving was. Instead, it is brilliant and sunny, about 70 degrees. But perhaps by the end of the day, the warm food, hot cider and candles will seem appropriate.
I need to do these things in this house, to try to work out the things that still make it feel not quite like home. The house itself is looking good, but I still find myself missing my “old” house, or some of those features, most specifically: the storage space and the fireplace! But this is our house now, and it does mostly work for us. In a few years, I imagine that Sofie will need more space, either a larger bedroom so she can have her own desk or some other space in the downstairs, carved out for her use. The large “playroom” space here is very underutilized. I keep imagining that I might have one of those home show people from HGTV come and tell me what to do to make it all work better. You would think I would know, since I have watched enough of those shows. My big fantasy is that I have the folks from Mission Organization, Design on a Dime, Curb Appeal and who knows what else all meet, fix it all and leave me with my Barbie Dream house. Oh well, I should be happy that we have a house and work from there.
I still find myself keeping stuff I don’t use much or need. I use my alone time to organize my closets and things. Other people would go out, shop, etc. Not me, not this year. This is the year of the nesting. Finally making peace with where I am, the next step is to make the where work better!
The weekend went by too fast. I had Sofie until Friday PM, after we went to a movie “Happy Feet” she went to stay with Jamie for two days, until later this afternoon. I also have a new, or rather returned family member: we are trying to reunite Boone, the boy cat, with his sister Gracie. The poor cats have been way too traumatized by all the moves, separations, etc. So far, Boone has been hiding non-stop, but I am hopeful that in a few days, he will realize he is “home” again, and safe. That is truly what it is all about, not the decorating.
Oh, a note, before I close, on the hair, since many have asked. It is growing back, in kind of a silver mixed with the old brown. The texture right now, with the very short hair, is kind of pettable, like a cat! About three weeks ago, I went to work wearing the wig. I got hot (it was one of those nearly 80 degree days) and I took off the wig for a bit to cool down. And never put it back on. I realized that day, I was done, my short hair is a symbol of the survival and besides, it looks kind of cool. So now, with my eyebrows back, and my very short hair, shorter even than the buzzed hair, I am back in the world, wigless and proud! And sometimes, cold. I was sorry not to see the hair come back in thick (dark) curls, but it remains to be seen how thick it will actually be and how silver. I might just not color it again, but don't quote me on that. I have had nothing but positive feedback and that has stroked my ego, but also reminded me that I am strong, and I did survive this whole period really well.
Gratitude Attitude
(orignally sent as e-mail on 11/22/06)
I am in denial, despite the holiday ads, the relentless profusion of holiday foods in the supermarket, and the fact that I have already shipped holiday gifts to my nieces and nephews. I cannot believe that tomorrow is Thanksgiving. Wasn’t it just a month or so ago that the first cool crisp fall air made me smile? Mid-October (the 20th to the 22nd), we traveled to Western NC (near Asheville) to attend the Leaf Festival (on Saturday) and watch the leaves turn their brilliant colors on what seemed liked thousands of trees?
Now, not only does it feel more like winter is truly approaching, but tomorrow, we are going to be celebrating Thanksgiving. The temperatures are so variable, from very chilly when leaving for school in the early am to warming into the 70’s some days. Very odd. But a few heavy duty rainstorms have taken most of the leaves off the trees for the season. So now I am more comfortable about getting the leaves blown off the lawn (or whatever the heck you call all this land) and bagged. It seems a weird thing to do month to month leading up to this time, as they simply fall down again. What exactly is the point of blowing them week to week? Still one of those cultural things that baffles this ex-Californian.
This season, I am truly celebrating, in a most profound way, the year that has been, and still is, 2006. What a path to travel in a short span of less than a year.
Last year about this time, I truly doubted that I would be in NC to celebrate anything at all this time of the year. I was sure that we would be back in CA, where our spirits and hearts felt at home. But that was not what the year had in store for me.
In March, with one ultrasound, my world was turned around. The diagnosis of cancer is a scary one and although I was blessed to have a “good” diagnosis, caught early and treated aggressively, it was still a life-awakening event. And so in March, the path veered quite a bit from the plan to pack it all up and move “back” and slowly I realized that I was planting my roots in Southern soil. Granted, at this advanced age, the rooting might take a longer time, and perhaps there will still be doubts from time to time, but the rules of the game changed last March. And I cannot ask for a “do-over”.
When you have cancer, you become, in this crazy world of private insurance, a much higher risk. So if I were to be self-employed again, I would be too expensive to insure myself! At first, I felt that this was like a bad hand of cards I had been dealt. But now, in retrospect, I see it differently. Perhaps the universe was simply telling me to just let it be, to stop trying to un-do the move, the whole east coast thing, and to just settle in or down, or something. Whatever it was, I don’t feel like I am fighting anymore.
This year, tomorrow, Sofie and I will join friends here and celebrate that we have relearned what “family” means, that I have learned to trust again, in a way I was sure I would not, could not do, that I have begun to feel settled in a place that seemed an impossible fit a year ago, and that I have taken in the kindness, caring and generosity of many, which I hope has made me a better person. I had to allow that to happen, to let myself receive when I needed to. It took the cancer diagnosis and treatment to make that happen, but whatever the reason, I am profoundly grateful for little things, and for the big thing, that I am still alive, feeling almost like myself again, that I have eyebrows and hair, and that Sofie made it through this period apparently unharmed by all the fears, changes in routine and visible signs that I was sick. And she entered the first grade just like any other little six year old.
I want to take this time to thank all of you, each of you who wrote encouraging emails, made phone calls, brought me to chemo, gave me a massage, took Sofie for a few hours, stayed with me for a week at a time (thank you Sue Hirshon from Los Angeles and Carrie Helser from San Francisco), and generally entertained me through the five months of treatment and discomfort. I will always remember this time, and mostly in a very positive way, as being, well, life changing and very enlightening.
As you gather tomorrow to celebrate (or in Brenda’s case, board a plane to run a marathon in Italy!!!) please take a moment during your day to feel deeply appreciated and loved. I plan to send out that energy all day tomorrow, non-stop, so that everyone who is reading this might feel it just a little bit. You are all part of my circle, my safety net in life, and for your presence there, I am most grateful.
Happy Thanksgiving.
I am in denial, despite the holiday ads, the relentless profusion of holiday foods in the supermarket, and the fact that I have already shipped holiday gifts to my nieces and nephews. I cannot believe that tomorrow is Thanksgiving. Wasn’t it just a month or so ago that the first cool crisp fall air made me smile? Mid-October (the 20th to the 22nd), we traveled to Western NC (near Asheville) to attend the Leaf Festival (on Saturday) and watch the leaves turn their brilliant colors on what seemed liked thousands of trees?
Now, not only does it feel more like winter is truly approaching, but tomorrow, we are going to be celebrating Thanksgiving. The temperatures are so variable, from very chilly when leaving for school in the early am to warming into the 70’s some days. Very odd. But a few heavy duty rainstorms have taken most of the leaves off the trees for the season. So now I am more comfortable about getting the leaves blown off the lawn (or whatever the heck you call all this land) and bagged. It seems a weird thing to do month to month leading up to this time, as they simply fall down again. What exactly is the point of blowing them week to week? Still one of those cultural things that baffles this ex-Californian.
This season, I am truly celebrating, in a most profound way, the year that has been, and still is, 2006. What a path to travel in a short span of less than a year.
Last year about this time, I truly doubted that I would be in NC to celebrate anything at all this time of the year. I was sure that we would be back in CA, where our spirits and hearts felt at home. But that was not what the year had in store for me.
In March, with one ultrasound, my world was turned around. The diagnosis of cancer is a scary one and although I was blessed to have a “good” diagnosis, caught early and treated aggressively, it was still a life-awakening event. And so in March, the path veered quite a bit from the plan to pack it all up and move “back” and slowly I realized that I was planting my roots in Southern soil. Granted, at this advanced age, the rooting might take a longer time, and perhaps there will still be doubts from time to time, but the rules of the game changed last March. And I cannot ask for a “do-over”.
When you have cancer, you become, in this crazy world of private insurance, a much higher risk. So if I were to be self-employed again, I would be too expensive to insure myself! At first, I felt that this was like a bad hand of cards I had been dealt. But now, in retrospect, I see it differently. Perhaps the universe was simply telling me to just let it be, to stop trying to un-do the move, the whole east coast thing, and to just settle in or down, or something. Whatever it was, I don’t feel like I am fighting anymore.
This year, tomorrow, Sofie and I will join friends here and celebrate that we have relearned what “family” means, that I have learned to trust again, in a way I was sure I would not, could not do, that I have begun to feel settled in a place that seemed an impossible fit a year ago, and that I have taken in the kindness, caring and generosity of many, which I hope has made me a better person. I had to allow that to happen, to let myself receive when I needed to. It took the cancer diagnosis and treatment to make that happen, but whatever the reason, I am profoundly grateful for little things, and for the big thing, that I am still alive, feeling almost like myself again, that I have eyebrows and hair, and that Sofie made it through this period apparently unharmed by all the fears, changes in routine and visible signs that I was sick. And she entered the first grade just like any other little six year old.
I want to take this time to thank all of you, each of you who wrote encouraging emails, made phone calls, brought me to chemo, gave me a massage, took Sofie for a few hours, stayed with me for a week at a time (thank you Sue Hirshon from Los Angeles and Carrie Helser from San Francisco), and generally entertained me through the five months of treatment and discomfort. I will always remember this time, and mostly in a very positive way, as being, well, life changing and very enlightening.
As you gather tomorrow to celebrate (or in Brenda’s case, board a plane to run a marathon in Italy!!!) please take a moment during your day to feel deeply appreciated and loved. I plan to send out that energy all day tomorrow, non-stop, so that everyone who is reading this might feel it just a little bit. You are all part of my circle, my safety net in life, and for your presence there, I am most grateful.
Happy Thanksgiving.
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