Before I even start, I want to say thank you. For the love, the prayers, the thoughts and the cards and e-mails. For cheering me up and supporting me, whether locally or from across the country. I truly feel loved. And that is so important.
You might think my title would be more celebratory, as I have completed my full six rounds (sessions?) of chemotherapy as of this week. But to catch you up, I have to go backwards a few weeks.
As many of you know, Jamie has been invaluable in helping me get through the treatments by taking Sofie the week of the treatment so I could rest unencumbered by our child’s high energy needs! We visit during this time, but it means I can focus on sleeping and healing and not so much on bath time, packing lunches, etc.
But new developments here that have changed things around for us. About two weeks ago, Jamie went into the hospital and had surgery to remove her uterus. Amazingly, they found cancer. She is not yet 41. This has really shaken all of us up, she has a lot of healing to do from the surgery itself. Since her condo has three levels of stairs, she came from the hospital to my house for a week to recuperate. A bit bumpy at first, as we all adjusted. But I moved down to the guest room and was quite comfy. Jamie stayed in the first floor bedroom so there would be no stairs to navigate at all for at least a week.
They sent her home and a week later, took out the staples in her belly. Leaving an open wound! I did a bit of wound care, which was a bit overwhelming the first time, but now she is home and managing it as she heals.
She has not yet heard from the doctors what the exact treatment plan will be, but it is probably going to be radiation. They did not think (early in this process) that it would be chemo. I have no idea how vigorous radiation will be, but I know that it will also be tiring. But she gets to keep her hair and eyebrows with that type of treatment.
So, there we have the situation that comes on the heels of what should be a time of joy, the end of my treatment. Five months almost to the day that I found out I had cancer, I completed the last chemo treatment on Tuesday this week.
On day and night before I had my last chemo treatment, I was focused! Several nights before, I ended each evening by visualizing a lot of white light and healing energy. And watching a Netflix episode of Weeds, to get me ready for Season Two.
Tracey gave me one of her magical healing massages before she left on a short vacation. On Monday afternoon, I had an acupuncture treatment to work on controlling the post treatment nausea and the joint and bone aches I have been experiencing. The acupuncture has been pretty amazing at the nausea and pain control, it doesn’t make it completely disappear, but it is a lot better.
About 6 PM, Sofie and I went to the airport to pick up Carrie Helser who was arriving from San Francisco to help me out in this last treatment. The fatigue, as you might imagine, has been getting more pronounced. I barely make it past Sofie’s going to sleep at night. And I yawn, a lot.
I remember once, someone in a TV program saying their “get up and go had got up and went”. So it is for me.
So Tuesday we took Sofie to YMCA camp (she has finished her three weeks at Camp Riverlea, more of a nature camp, where she had a blast). Then headed out to Duke at 11 AM. Later than usual appointments, as the day had been switched to Tuesday so I had the energy over the past weekend for Sofie’s sixth birthday party. Whoa, when you get to Duke after 9 you can see how the schedule has gotten out of control. Overall, I was about two hours behind all day. But otherwise, once the appointment in the treatment unit started, I was fine. Chris, my lovely nurse, was wonderful. Nothing like the last visit which had been such a disaster! She was in a celebratory mood with me, for the final treatment.
Carrie and I had stopped at Whole Foods prior to getting to Duke, so we had a small cooler of wonderful gourmet treats for lunch, including sushi. Beats the heck out of hospital food. We played one game of Scrabble, I was pretty groggy and Carrie won that game! But we both had pretty crappy letters throughout.
It was over without fanfare at 6 PM. I wonder what I had expected to feel? Relief? Joy? Mostly I was just, well, tired. Picked up Sofie from Jamie’s house (our friend Delma just happened to stop by Jamie's and was able to drive and get her that afternoon). And then just moved slowly until bedtime.
I do feel a great sense of relief that the treatments are over. I don’t really have a clear idea of what happens next, the docs are not that forthcoming with the plans, unless you ask them directly. I had not seen my regular doctor anyway, so I did not ask much. I will continue to have blood work for a while, while they watch my levels go up to normal, hopefully soon. I have one more dose of Procrit to take to boost my red blood cells, then they will be on their own.
I will begin to feel better and more normal within two months, they tell me. I hope so. I almost have forgotten what it feels like to bounce out of bed in the morning and go the whole day and not feel like I want to collapse by dinnertime. I kind of missed this summer, but it was a hot one (still is) and for now, I am content to be mellow.
Sofie starts first grade in a few weeks, and we (and I do mean we) will have lots to do to keep up with that. She has been very resistant to writing or even doing her reading this summer, another reason I think year round school is truly a better option when available. But hopefully it will come back to her when she is in school. First grade means real homework, about 15 minutes or so a night. Getting that in with the playtime, bedtime routines and all that, will be a challenge, but we will get used to it.
My work has been very accommodating, but I am sure they are ready for me to get back to my full self, to try to follow through on things that have been “on hold” for lack of a better word. Fortunately, libraries don’t move at a rapid pace overall, but I do have things I need to get back to. This is the most challenging job in development I think I have ever had. The donors are just not there. So I will have to be even more creative as I move forward. It is even harder than in the earlier days of HIV when people were afraid or cautious of giving to HIV issues, because of the stigma.
Before I close this more or less somber piece, I have to share some fun stuff from Sofie’s birthday event. It was at a place called Pump It Up last Saturday. This place has a room filled with those inflatable bouncy things kids love. There were 17 or 18 kids there, plus the assorted parents. Sofie was thrilled that so many of her friends came. She was very excited to see Corey, evidently he is the “the boyfriend” she mentioned months back. But she (Sofie) has some competition for that little heartbreaker of a six year old boy. He sauntered (yes, sauntered!) into the party and said “Hey Sofie”. Another little girl, Sarah seems to also have a major thing for him. She got his attention and they played air hockey together. Sofie did not seem to notice, so perhaps she is over him! He is really cute, however, and seems to know his power over the six year old girl set.
Sofie loved her party and insisted I go down the big slide with her at least once. Once was about all I could manage, the one slide made me feel like I had been on the open seas for about two days, my equilibrium was not so good. She must have gone down that slide 50 times. At least.
Sofie also had directed her desires about her cake: Chocolate inside (cake and filling) and white icing with snakes on it. Costco does not quite do the snake motif (although with the Snakes on A Plane film, perhaps they should reconsider). Anyway, I applied the snakes for extra dazzle and Sofie was delighted. The kids ran themselves ragged for about an hour and 45 minutes, then we went into the party room to infuse them with more sugar (cake, juice bags and goody bags with candy and toys). Sofie sat on a big throne to open her gifts. The list I sent out with her invites worked! Not a Barbie in the batch. Lots of great art stuff, some toys, games and books and overall, she liked everything.
Finally, in that way life is so ironic, I have heard this week from three college friends. All of them have grown children either in or done with college. College! I on the other hand, spent a half hour on the internet this AM, trying to track down some sort of specialized composition book for first graders. Finally located it, (not in any of the stores I have been to) and ordered them online. Ridiculous. But they were on the list.
And so, now what? I am not quite sure, but you can bet I will keep on. And keep writing.
I am going to stop now, but also want to again say thank you from the bottom of my heart, to all my friends and family who have sent their love, best wishes and prayers during this time. Keep sending them, and if you could, send a little Jamie’s way as well.
Thursday, August 10, 2006
Tuesday, July 18, 2006
In which I attempt to cut myself some slack
Where has the time gone? You would think that time would feel like it was moving more slowly, what with the temperatures in the 90’s many days, and today, reaching to 99 degrees or (dare I even write this, 100?). Unfit for humans, at least humans in work clothes.
But today that does not include me, I am still home, post last Friday’s treatment. They (the medical they) were right, the effects are cumulative and I simply don’t bounce back as fast. The great news is that I have only one more treatment to go! Which is good, because I am so over this. Not the hair loss or even the actual treatment, just the after effects. I am tired of being tired. I know I am not the first to voice that sentiment, but as you all know, being still is not my forte. And so all this resting and napping has gotten to be a bit of a nuisance, you know?
I should be productive in the house, but I am just kind of slugged out, so typing and emailing is about the level of activity today. Perhaps tomorrow, I will do better. Oh, yes, and I am in the process of sending out the invitations to Sofie’s sixth birthday. A bit later than I had hoped, but they will be out today, which is a tasteful almost three weeks in advance. Since this is not a $250 per plate black tie benefit, the typical four weeks and three days in advance might be gracefully waived. The elementary school set is much more forgiving about these things.
The big challenge is finding a nice way to communicate about the presents. None are “needed” of course, and she is in that awkward age of being between preschooler and teenager in the toy department. I went looking for things, ideas, at Toys R Us and was disappointed. She is completely not into “girls toys” (all pink and Bratz dolls and Barbies) except for those My Little Ponies and I personally think the stable is full there. But she is aware of every one she does not have and wants them all. Why, I cannot say.
But other than that, her interests are more in science things (like the butterfly habitat my Mom gave her) and cars and yes, snakes, still. She has eight or nine large stuffed ones, and we don’t need any more, but fortunately, she has two rooms that she can populate with her creatures. So snakes still rule. And art things or building things are always good, so I am making a tasteful list, with all sorts of ranges of prices, to let parents know when they ask. Otherwise, they might get a Barbie, unknowingly, and have to watch it get dropped to the floor in disgust. She hasn’t mastered that polite “oh, how nice” fake thank you yet. A good thing, I guess.
In order to make room for more things, I have begun to do stealth purges of little plastic items from her room and play space. Nothing too dramatic, but you would be amazed at how this stuff accumulates. So here is what I do, when I can: I pick up little items, sort them and take those that don’t seem to be in rotation much out of the mix, putting them in a plastic bag in the closet for three months. If she doesn’t ask about them for that time period, I feel it is safe to give them or toss them away. Same with clothes. She gets attached to things, even if they don’t fit, but if I simply move them out of the closet she seems to be more ok with that. I know that someday, when she is in therapy, she will be saying that she was nagged by constantly missing items in her room as a young child, and probably thought she was losing her mind.
It is partly my fault, I get so enamored of those little toys like the cars from the Pixar movie, and then set out to “collect” them (you don’t have to buy a meal, you can just get the toys) and then she gets into it, and I am going around from McDonalds to McDonalds seeking out the “Mater” truck. With no success, mind you.
I guess eventually I could sell them on e-Bay, but I know I won’t. I am such a wuss.
Who knew as a parent I would care so much about what backpack she had or the type and color of her raincoat? Really, I swear I wasn’t going to be that sort of Mom, but somehow I get into it, and I care. Too much!
The best gift she has received, a bit early, is a trampoline. Jamie found one for sale used, with the protective sides, to keep bouncing kids contained. Sofie loves it, and even when the temperature is hovering over 90 something, wants to bounce. And bounce. It is a good thing to exhaust her, however, and that gets her to sleep early. Also good, because camp is exhausting too. What a life, camp, bouncing, just all that fun. Six is the bomb.
Flashback to last month (the missing blog)
So, it was a month ago that we traveled to California for our visit. We left the Friday of her last day of school. What a week. I tried hard to pace myself, so my apologies to all of you that I did not see. I put quite a number of miles on the little rental car, something called a Cobalt. Which made me appreciate my solid Subaru wagon all the more! First and foremost, thanks to all of you who replied to my childcare request and my wild appreciation to Janice B for coming through in response to my Urgent Request for a Babysitter when Plan A and Plan B fell apart. Janice and I have known each other for many years, through Passport related agency work, I think, and Academy of Friends, perhaps. She reminded me how wonderful people in my life can be. Her response was a delightful surprise, but enabled me, on the first night in CA, to attend the GLAAD Media Awards with the handsome Mario Diaz, who was my host. What fun. My sister styled me (rejecting the outfit I had brought in favor of a more sophisticated look) and she lent me some things, including shoes, so I was properly attired. I was not so keen on Dee Dee (I am much too self conscious about that wig), but the look mostly worked. Which was good, because I got to meet Carson Kressley from Queer Eye and did not want to offend him by wearing a terrible outfit. He did not seem to notice what I was wearing, he was much more interested in my date, Mario! I stayed up past one AM, which was a first for me since the surgery in March.
I was excited to attend the event to immerse myself in all things gay! I am sorely lacking that gala event energy here in the Triangle. Not quite sure why, I imagine it is because my life is so far away from the HIV world and the LBGTQ world day to day. I am involved a bit with a women’s group (mostly lesbian, but they say women’s) here doing some fundraising for their fall event’s silent auction, but nothing like the bay area. I was actually feeling like I needed a “fix” of gay male energy, which the GLAAD event provided. But I needed to be surrounded by gay men and dressy lesbians, and it fit the bill, just perfectly. And I was good and did not even look at their auction items.
One highlight of the trip, at least for Sofie, was the trip with Naomi and her Mom Joanna, to the Jelly Belly Factory in Vacaville. Worth the long drive, the girls had fun, so did the grown ups. And Sofie and Naomi got to have a sleepover together and I did too, at the gracious Laribee Inn. The balance of the visit was spent with people I love and miss. Not enough time, there never is. Thank you Pat and Eileen for hosting the posse supper. I hope to someday have you all here, although not enough sleeping accommodations! Perhaps in Mexico instead? I am visualizing a beach vacation, sometime in the future, where I get to hang out, drink those pink drinks with friends, each fresh fish and read and tan (sensibly of course). I am hoping to have a bit of hair by then, since it won’t be until 2007, but a “real” vacation has to be in my future, I can only hope.
About the "Incident"
Every visit to CA is celebrated with an official dinner at AsiaSF, thanks to gracious co-owners Larry and Skip, who treat me like visiting royalty. This visit, mid-week, I planned a dinner with Leigh. I wore shoes I never get to wear in Durham, and we sat at the bar. I had one drink, (they make the best lemondrops ever) and we started eating our wonderful food. I ordered another drink an hour into our visit, a Mojito and after one sip, realized I had better not!
We were chatting, the girls had just performed, and all of a sudden, as the crowded place got warmer and warmer, the room started to spin. I must have started to slip off my barstool! Leigh caught me, although I think I knocked her glass of red wine over. A quick trip outside, with fresh air, and I was fine. Except that I think everyone in the place thought I was drunk. I might need a different wig for the next visit. Larry, Skip, it ain't true. I was just hot! I blame hot flashes and chemo these days for a lot of weird stuff. I did get to hang out with Larry and also with Lord Martine, for a while after the incident, and finally there was a new crowd in the place, so nobody was staring!
The week culminated with my second cousin Nathan’s Bar Mitzvah and being surrounded by family. I needed that, and I guess so did they, since people have been worried about me. That Cancer word scares folks. Many of the folks who did not know complimented me on my new hairstyle. Which reminded me of how long it has been since I have even changed my regular hairstyle. So maybe that will be something I do after all this.
I have begun to think about the “after this” part. I need to, to avoid sinking into a depression right now. Nothing is really wrong, I am, as I started out saying, over this. And I want to see what life feels like here, not sick and not slowed down.
My work has been more generous than I could ever have imagined and colleagues have donated some time so I am covered for now on the extra sick leave I need. I found myself forcing myself to go in when I probably should not have. But I simply ran out of time, especially with that long planned CA trip taking up a week.
Without sounding completely mushy, I have to say that this whole experience of having cancer and chemo has been a life lesson. Truly. And not a bad one at that. Friends old and new, have showered me with love and care. My friend Sue, Mom to Noah (also six) from LA came out for treatment number three. And now, as I am facing treatment six, Carrie is planning to spend a week with me and with Sofie, helping me cope with the after effects. The last treatment is complicated even more because Jamie is having surgery next Tuesday and we don’t know how she will be feeling a few weeks later, when I have chemo for the last time. Jamie has been really supporting me and having Sofie at her place for weekends and more, during the week as well. That makes it possible for me to be the slacker I need to be right now. Some days, I can barely muster the energy to be a Mom. It must be boring for Sofie, my not having energy to play snakes or ponies sometimes, but then she gets to spend time with Jamie, so the times I am post treatment are less noticeable to her. Sofie probably doesn’t think I am much fun, but I try to entertain her with “movie nights” on a night when playing is too much for me.
So, with the help of my “care team” of Jamie, Delma, Betty, Tracey, Sharon, Beth, Susan and Joy, I am getting it done. I hope to throw a fun party when I can, to celebrate the people in my life who have been there for me.
Must stop now, and consider a nap.
But today that does not include me, I am still home, post last Friday’s treatment. They (the medical they) were right, the effects are cumulative and I simply don’t bounce back as fast. The great news is that I have only one more treatment to go! Which is good, because I am so over this. Not the hair loss or even the actual treatment, just the after effects. I am tired of being tired. I know I am not the first to voice that sentiment, but as you all know, being still is not my forte. And so all this resting and napping has gotten to be a bit of a nuisance, you know?
I should be productive in the house, but I am just kind of slugged out, so typing and emailing is about the level of activity today. Perhaps tomorrow, I will do better. Oh, yes, and I am in the process of sending out the invitations to Sofie’s sixth birthday. A bit later than I had hoped, but they will be out today, which is a tasteful almost three weeks in advance. Since this is not a $250 per plate black tie benefit, the typical four weeks and three days in advance might be gracefully waived. The elementary school set is much more forgiving about these things.
The big challenge is finding a nice way to communicate about the presents. None are “needed” of course, and she is in that awkward age of being between preschooler and teenager in the toy department. I went looking for things, ideas, at Toys R Us and was disappointed. She is completely not into “girls toys” (all pink and Bratz dolls and Barbies) except for those My Little Ponies and I personally think the stable is full there. But she is aware of every one she does not have and wants them all. Why, I cannot say.
But other than that, her interests are more in science things (like the butterfly habitat my Mom gave her) and cars and yes, snakes, still. She has eight or nine large stuffed ones, and we don’t need any more, but fortunately, she has two rooms that she can populate with her creatures. So snakes still rule. And art things or building things are always good, so I am making a tasteful list, with all sorts of ranges of prices, to let parents know when they ask. Otherwise, they might get a Barbie, unknowingly, and have to watch it get dropped to the floor in disgust. She hasn’t mastered that polite “oh, how nice” fake thank you yet. A good thing, I guess.
In order to make room for more things, I have begun to do stealth purges of little plastic items from her room and play space. Nothing too dramatic, but you would be amazed at how this stuff accumulates. So here is what I do, when I can: I pick up little items, sort them and take those that don’t seem to be in rotation much out of the mix, putting them in a plastic bag in the closet for three months. If she doesn’t ask about them for that time period, I feel it is safe to give them or toss them away. Same with clothes. She gets attached to things, even if they don’t fit, but if I simply move them out of the closet she seems to be more ok with that. I know that someday, when she is in therapy, she will be saying that she was nagged by constantly missing items in her room as a young child, and probably thought she was losing her mind.
It is partly my fault, I get so enamored of those little toys like the cars from the Pixar movie, and then set out to “collect” them (you don’t have to buy a meal, you can just get the toys) and then she gets into it, and I am going around from McDonalds to McDonalds seeking out the “Mater” truck. With no success, mind you.
I guess eventually I could sell them on e-Bay, but I know I won’t. I am such a wuss.
Who knew as a parent I would care so much about what backpack she had or the type and color of her raincoat? Really, I swear I wasn’t going to be that sort of Mom, but somehow I get into it, and I care. Too much!
The best gift she has received, a bit early, is a trampoline. Jamie found one for sale used, with the protective sides, to keep bouncing kids contained. Sofie loves it, and even when the temperature is hovering over 90 something, wants to bounce. And bounce. It is a good thing to exhaust her, however, and that gets her to sleep early. Also good, because camp is exhausting too. What a life, camp, bouncing, just all that fun. Six is the bomb.
Flashback to last month (the missing blog)
So, it was a month ago that we traveled to California for our visit. We left the Friday of her last day of school. What a week. I tried hard to pace myself, so my apologies to all of you that I did not see. I put quite a number of miles on the little rental car, something called a Cobalt. Which made me appreciate my solid Subaru wagon all the more! First and foremost, thanks to all of you who replied to my childcare request and my wild appreciation to Janice B for coming through in response to my Urgent Request for a Babysitter when Plan A and Plan B fell apart. Janice and I have known each other for many years, through Passport related agency work, I think, and Academy of Friends, perhaps. She reminded me how wonderful people in my life can be. Her response was a delightful surprise, but enabled me, on the first night in CA, to attend the GLAAD Media Awards with the handsome Mario Diaz, who was my host. What fun. My sister styled me (rejecting the outfit I had brought in favor of a more sophisticated look) and she lent me some things, including shoes, so I was properly attired. I was not so keen on Dee Dee (I am much too self conscious about that wig), but the look mostly worked. Which was good, because I got to meet Carson Kressley from Queer Eye and did not want to offend him by wearing a terrible outfit. He did not seem to notice what I was wearing, he was much more interested in my date, Mario! I stayed up past one AM, which was a first for me since the surgery in March.
I was excited to attend the event to immerse myself in all things gay! I am sorely lacking that gala event energy here in the Triangle. Not quite sure why, I imagine it is because my life is so far away from the HIV world and the LBGTQ world day to day. I am involved a bit with a women’s group (mostly lesbian, but they say women’s) here doing some fundraising for their fall event’s silent auction, but nothing like the bay area. I was actually feeling like I needed a “fix” of gay male energy, which the GLAAD event provided. But I needed to be surrounded by gay men and dressy lesbians, and it fit the bill, just perfectly. And I was good and did not even look at their auction items.
One highlight of the trip, at least for Sofie, was the trip with Naomi and her Mom Joanna, to the Jelly Belly Factory in Vacaville. Worth the long drive, the girls had fun, so did the grown ups. And Sofie and Naomi got to have a sleepover together and I did too, at the gracious Laribee Inn. The balance of the visit was spent with people I love and miss. Not enough time, there never is. Thank you Pat and Eileen for hosting the posse supper. I hope to someday have you all here, although not enough sleeping accommodations! Perhaps in Mexico instead? I am visualizing a beach vacation, sometime in the future, where I get to hang out, drink those pink drinks with friends, each fresh fish and read and tan (sensibly of course). I am hoping to have a bit of hair by then, since it won’t be until 2007, but a “real” vacation has to be in my future, I can only hope.
About the "Incident"
Every visit to CA is celebrated with an official dinner at AsiaSF, thanks to gracious co-owners Larry and Skip, who treat me like visiting royalty. This visit, mid-week, I planned a dinner with Leigh. I wore shoes I never get to wear in Durham, and we sat at the bar. I had one drink, (they make the best lemondrops ever) and we started eating our wonderful food. I ordered another drink an hour into our visit, a Mojito and after one sip, realized I had better not!
We were chatting, the girls had just performed, and all of a sudden, as the crowded place got warmer and warmer, the room started to spin. I must have started to slip off my barstool! Leigh caught me, although I think I knocked her glass of red wine over. A quick trip outside, with fresh air, and I was fine. Except that I think everyone in the place thought I was drunk. I might need a different wig for the next visit. Larry, Skip, it ain't true. I was just hot! I blame hot flashes and chemo these days for a lot of weird stuff. I did get to hang out with Larry and also with Lord Martine, for a while after the incident, and finally there was a new crowd in the place, so nobody was staring!
The week culminated with my second cousin Nathan’s Bar Mitzvah and being surrounded by family. I needed that, and I guess so did they, since people have been worried about me. That Cancer word scares folks. Many of the folks who did not know complimented me on my new hairstyle. Which reminded me of how long it has been since I have even changed my regular hairstyle. So maybe that will be something I do after all this.
I have begun to think about the “after this” part. I need to, to avoid sinking into a depression right now. Nothing is really wrong, I am, as I started out saying, over this. And I want to see what life feels like here, not sick and not slowed down.
My work has been more generous than I could ever have imagined and colleagues have donated some time so I am covered for now on the extra sick leave I need. I found myself forcing myself to go in when I probably should not have. But I simply ran out of time, especially with that long planned CA trip taking up a week.
Without sounding completely mushy, I have to say that this whole experience of having cancer and chemo has been a life lesson. Truly. And not a bad one at that. Friends old and new, have showered me with love and care. My friend Sue, Mom to Noah (also six) from LA came out for treatment number three. And now, as I am facing treatment six, Carrie is planning to spend a week with me and with Sofie, helping me cope with the after effects. The last treatment is complicated even more because Jamie is having surgery next Tuesday and we don’t know how she will be feeling a few weeks later, when I have chemo for the last time. Jamie has been really supporting me and having Sofie at her place for weekends and more, during the week as well. That makes it possible for me to be the slacker I need to be right now. Some days, I can barely muster the energy to be a Mom. It must be boring for Sofie, my not having energy to play snakes or ponies sometimes, but then she gets to spend time with Jamie, so the times I am post treatment are less noticeable to her. Sofie probably doesn’t think I am much fun, but I try to entertain her with “movie nights” on a night when playing is too much for me.
So, with the help of my “care team” of Jamie, Delma, Betty, Tracey, Sharon, Beth, Susan and Joy, I am getting it done. I hope to throw a fun party when I can, to celebrate the people in my life who have been there for me.
Must stop now, and consider a nap.
Friday, June 09, 2006
Now We Are (Almost) Six
Sofie will be six in August, she is so trying hard and vigorously to be independent. She objects when I say things like "honey be careful with that". She looks at me in "that way" and says with emphasis "Mom, you always say that. I am careful". This can be about all sorts of things, such as assisting me with cooking (I don't want her to get burned) or using a glass drinking glass or her asking to drive the other day.
She is, according to her school teachers and the guidance person, quite popular with her afterschool set. She goes to public school, and her school is at least two thirds African American. Sofie's posse is mostly young black girls, and her language has begun to incorporate some slang terms, ones where I had no idea of their meaning! As in "oh, snap!". For more info on what this means, go to http://www.urbandictionary.com/define.php?term=o+snap
She is slightly infuenced by her peers, they got her thinking and wearing dresses and skirts, but she still climbs and is an active sporty kid. Plays with girls and boys. Not girly, but is growing hair out and that involves all sorts of hair accessories, which go in every day and often are not there by pick up time. I have taken to buying new ones nearly every time I go grocery shopping, to keep us in hair clips. Not expensive one at a time, but they add up.
We are packing for California trip and she has all sorts of ideas about what toys to bring. She is still snake obsessed and wants to bring these four foot plush snakes in her carry on luggage. That will impress the airlines, I am sure. No dolls need apply. And of course, the portable DVD player is essential.
She asked today why we don't go to CA and get our old house back. I asked why and she said, "because it is bigger" (which technically is not true, both houses are about the same square footage, this one is just configured differently). I refrained from explaining how we were forever priced out of the market there! I told her our current house was plenty big, but she went into a long description of how she used to have her toy zoo in the space in the Oakland living room. Her recall from her toddler years is totally amazing. I could not believe how detailed she described the window seat area. And that toy was a 3rd birthday present , but she accurately remembers it. It "disappearedz" over a year ago. This is why is it tough to purge her toy collection, she has detailed recall and will ask for something I "removed" six months ago.
But I have to do those stealth purges, or the toys will take over her space completely.
Sofie thinks both Jamie and I are too bossy. She should talk! But she is also very sweet, very fun to watch grow up. She is affectionate and will come over in the middle of a meal or something, kiss me and say "I love you mom". She also has become quite affectionate and caring of Gracie, our cat. Her compassion gets me every time!
We are in the process of making the guest list for her birthday. One big difference in being almost six is that she has *very* clear opinions about the whole thing, not like last year, when I got to plan the party. From where to have it (Pump It Up, a place with huge bouncing structures for kids to run wild in) to the gift bag items (she totally rejected my idea of cute little stuffed Build A Bear miniatures) to the menu, she is all over that event. Hmmm, who does that sound like?
It is funny how kids who are not biologically related to you can pick up on your mannerisms, characteristics or whatever. They say kids are born with their basic temperments, which I find reassuring to know. But sometimes, I see myself in her and not always in a good way.
I love watching this process of her growing up.
She is, according to her school teachers and the guidance person, quite popular with her afterschool set. She goes to public school, and her school is at least two thirds African American. Sofie's posse is mostly young black girls, and her language has begun to incorporate some slang terms, ones where I had no idea of their meaning! As in "oh, snap!". For more info on what this means, go to http://www.urbandictionary.com/define.php?term=o+snap
She is slightly infuenced by her peers, they got her thinking and wearing dresses and skirts, but she still climbs and is an active sporty kid. Plays with girls and boys. Not girly, but is growing hair out and that involves all sorts of hair accessories, which go in every day and often are not there by pick up time. I have taken to buying new ones nearly every time I go grocery shopping, to keep us in hair clips. Not expensive one at a time, but they add up.
We are packing for California trip and she has all sorts of ideas about what toys to bring. She is still snake obsessed and wants to bring these four foot plush snakes in her carry on luggage. That will impress the airlines, I am sure. No dolls need apply. And of course, the portable DVD player is essential.
She asked today why we don't go to CA and get our old house back. I asked why and she said, "because it is bigger" (which technically is not true, both houses are about the same square footage, this one is just configured differently). I refrained from explaining how we were forever priced out of the market there! I told her our current house was plenty big, but she went into a long description of how she used to have her toy zoo in the space in the Oakland living room. Her recall from her toddler years is totally amazing. I could not believe how detailed she described the window seat area. And that toy was a 3rd birthday present , but she accurately remembers it. It "disappearedz" over a year ago. This is why is it tough to purge her toy collection, she has detailed recall and will ask for something I "removed" six months ago.
But I have to do those stealth purges, or the toys will take over her space completely.
Sofie thinks both Jamie and I are too bossy. She should talk! But she is also very sweet, very fun to watch grow up. She is affectionate and will come over in the middle of a meal or something, kiss me and say "I love you mom". She also has become quite affectionate and caring of Gracie, our cat. Her compassion gets me every time!
We are in the process of making the guest list for her birthday. One big difference in being almost six is that she has *very* clear opinions about the whole thing, not like last year, when I got to plan the party. From where to have it (Pump It Up, a place with huge bouncing structures for kids to run wild in) to the gift bag items (she totally rejected my idea of cute little stuffed Build A Bear miniatures) to the menu, she is all over that event. Hmmm, who does that sound like?
It is funny how kids who are not biologically related to you can pick up on your mannerisms, characteristics or whatever. They say kids are born with their basic temperments, which I find reassuring to know. But sometimes, I see myself in her and not always in a good way.
I love watching this process of her growing up.
Thursday, June 01, 2006
In which I ponder the use of anti-nausea drugs for Disneyworld
Last weekend, deferring ever so slightly my third chemo appointment, I took my nearly six year old daughter to Disneyworld. Yep, on Memorial Day weekend. But wait, before you shake your head in disbelief, know that the trip was planned ages ago, with friends Joanna and Naomi in Oakland. They were there for family function, and thought it would be fun to join them. It was. Hot (90 plus, oh yeah), and humid, check. But the girls seemed totally oblivious to heat and humidity. Only the two grown ups were constantly sweating and looking for air conditioned places!
The first day we went to Animal Kingdom, the one with the real animals, not the Disney faux ones. We took the Safari ride and saw the Lion King show. We walked all over the place (well, Joanna and I did, the girls rode in style in the double wide stroller).
But it was fun, of a sort. We ended the evening with a promise of playing in the pool at the motel at night, but alas, we were pre-empted by a storm. So the next day, we let them splash themselves into a happy oblivion and then headed out to Sea World. With promises of Shamu dancing in her head, Sofie was happy to go. Again, the logistics of the theme park experience took a sit down meeting and pencil and paper. “OK, so if you (Joanna) take them to the Dolphin show, I will head over to the Shamu stadium and wait in the line”. Sounded like a great plan. And it was, despite the huge torrential rainstorm on the way. It melted my Seaworld map, but I persevered. I got there, drenched literally to my underwear, and spent the next hour and fifteen minutes awaiting the perfect seats.
Out of the “soak zone” (Shamu packs a wallop with his/her tail). We had front row balcony seating, perfect. Then coordinates were called into Joanna’s cell phone. Section B, 3-5. I gave her the coordinates. Unfortunately, she entered the stadium on the wrong side, and called back. I stood up, clear on the opposite side and waved wildly, holding my cell phone. Finally, she waved back and soon the whole lot of them were seated and waiting for the show to begin. So, just exactly how did people function before cell phones, I wonder? Would we still be looking for each other in that vast man-made ocean?
The show was wonderful, the girls were exhausted. We circled by the food station and after the feeding was over, headed out.
Joanna and Naomi dropped us off to head back to her brother’s home in Orlando. We were on our own for the last day. Sofie and I headed out to Magic Kingdom on the free bus, knowing the return to the motel had only one option: 7 PM. Not a drop of flexibility there, no sireeee. Once there, we went straight to Tomorrowland, which I think is now more Buzz Lightyear and less Jetsons, and got a FastPass for the Buzz ride. She loved it and wanted to go again. Another FastPass, for about an hour later. We went (twice again) on another more lame ride around Tomorrowland and then back to Buzz. Then FastPass for Space Mountain. A brief break for a popsicle and away we went. I kept reassuring her that the ride would be fun. She was in the middle of a three person car with me right behind her, hands on her little shoulders for comfort. Then WHAM! that thing blasted away and hurtled us through the ride. I had forgotten the roller coaster part I guess, or something. She was squealing in delight, I was about to toss my cookies. I wondered if I should have taken one of my anti-nausea pills from Chemo. Too late. I barely made it off the ride, literally staggering in the heat and with my head spinning. “Let’s do it again, mom”. No way, we were only allowed to go once, it was a rule, I lied. I would never have made it.
We headed to the TeaCup ride, and I realized that there was no way I would be able to handle it. I recruited another parent from the line and she took Sofie with her two twin boys. Sofie was happy to go, she loves those “dizzy rides”. I was dizzy just watching!
But we survived Disneyworld, without sunburn, and got home to RDU in time to meet up with my friend Sue, in from LA to watch over me as I went into round three of the chemo the next day.
More about that, later.
The first day we went to Animal Kingdom, the one with the real animals, not the Disney faux ones. We took the Safari ride and saw the Lion King show. We walked all over the place (well, Joanna and I did, the girls rode in style in the double wide stroller).
But it was fun, of a sort. We ended the evening with a promise of playing in the pool at the motel at night, but alas, we were pre-empted by a storm. So the next day, we let them splash themselves into a happy oblivion and then headed out to Sea World. With promises of Shamu dancing in her head, Sofie was happy to go. Again, the logistics of the theme park experience took a sit down meeting and pencil and paper. “OK, so if you (Joanna) take them to the Dolphin show, I will head over to the Shamu stadium and wait in the line”. Sounded like a great plan. And it was, despite the huge torrential rainstorm on the way. It melted my Seaworld map, but I persevered. I got there, drenched literally to my underwear, and spent the next hour and fifteen minutes awaiting the perfect seats.
Out of the “soak zone” (Shamu packs a wallop with his/her tail). We had front row balcony seating, perfect. Then coordinates were called into Joanna’s cell phone. Section B, 3-5. I gave her the coordinates. Unfortunately, she entered the stadium on the wrong side, and called back. I stood up, clear on the opposite side and waved wildly, holding my cell phone. Finally, she waved back and soon the whole lot of them were seated and waiting for the show to begin. So, just exactly how did people function before cell phones, I wonder? Would we still be looking for each other in that vast man-made ocean?
The show was wonderful, the girls were exhausted. We circled by the food station and after the feeding was over, headed out.
Joanna and Naomi dropped us off to head back to her brother’s home in Orlando. We were on our own for the last day. Sofie and I headed out to Magic Kingdom on the free bus, knowing the return to the motel had only one option: 7 PM. Not a drop of flexibility there, no sireeee. Once there, we went straight to Tomorrowland, which I think is now more Buzz Lightyear and less Jetsons, and got a FastPass for the Buzz ride. She loved it and wanted to go again. Another FastPass, for about an hour later. We went (twice again) on another more lame ride around Tomorrowland and then back to Buzz. Then FastPass for Space Mountain. A brief break for a popsicle and away we went. I kept reassuring her that the ride would be fun. She was in the middle of a three person car with me right behind her, hands on her little shoulders for comfort. Then WHAM! that thing blasted away and hurtled us through the ride. I had forgotten the roller coaster part I guess, or something. She was squealing in delight, I was about to toss my cookies. I wondered if I should have taken one of my anti-nausea pills from Chemo. Too late. I barely made it off the ride, literally staggering in the heat and with my head spinning. “Let’s do it again, mom”. No way, we were only allowed to go once, it was a rule, I lied. I would never have made it.
We headed to the TeaCup ride, and I realized that there was no way I would be able to handle it. I recruited another parent from the line and she took Sofie with her two twin boys. Sofie was happy to go, she loves those “dizzy rides”. I was dizzy just watching!
But we survived Disneyworld, without sunburn, and got home to RDU in time to meet up with my friend Sue, in from LA to watch over me as I went into round three of the chemo the next day.
More about that, later.
Tuesday, May 23, 2006
Going the Distance
OK, the little hairs on my head were driving me nuts, they were falling out rapidly all the past week, worse than any cat shedding. The little hairs were clogging the drain, getting all over the tub, and into my clothes where they itched like crazy. On Saturday, in a completely spur of the moment thought over breakfast, I went over to my regular hairdressers (Jamie was there getting a cut) and he buzzed the rest of my hair off. I have rough “peach fuzz” (although no self respecting peach should feel this way) and that will likely be out of my head in a week or so. Jamie took photos of this on her phone camera, not sure if they will download well, but we will see. First Eddie did a Mohawk so I can say I had one (for all of a minute). Just in case Sofie asks someday…by the way, she watched the whole thing. She thinks it looks funny. But that great card Brenda Laribee sent (from Trader Joe’s) helped, to prepare her for the totally naked head look.
Bald is, well, a bit of a startle, but, so this has to be better.
I actually got good feedback from some of my faithful readers who saw the photos of the first buzz and told me I looked “hot”. Hot is so not what I feel these days, but I took those compliments to heart and so now, with my totally Melissa E bald head, I am feeling pretty fine. In the house, I just go bare headed. Outside, I sometimes wear what I call “the chemo patient headscarf” but that is ok too.
Today is Tuesday, four days after treatment two. The pain is pretty harsh from Sunday through Tuesday. But otherwise, not too bad in terms of other stuff. Took the anti nausea pill the first night the next day. No nausea. I am grateful every time that happens. Still my worst fear. Saturday, went to breakfast with Jamie and Sofie. Then I took Sofie for a while so Jamie could do an appointment, I went to the Triangle Families parenting conference, and Sofie went to child care there, totally free (which was so nice). When it was lunchtime, I came upstairs to find her helping out with the setting up of the lunch tables, she was quite proud of herself. We had lunch together, and played with the babies after for a while. Then we left to go to the hair place. After that, Loco pops run and then Jamie took her to a kids concert, I went to Costco for one thing (and got a few more, of course) and then went home. I need to rest a bit. That bit of normalcy on a Saturday totally exhausted me. Wore my “cancer patient” head scarf today, leaving Dee Dee to the work days. At home, wearing a bandana, the air was on and my head was cold! I was ready for bed before 6:45 PM. B O R I N G, this life of mine.
I upped my Netflix subscription and saw three films in the past week. And I am caught up on all series (Huff, Big Love, West Wing and Desperate Housewives) that I watch sporadically.
Sunday, on the big drugs, I went to see Kate Clinton in a benefit performance for SWOOP, Strong Women Organizing Outrageous Projects. SWOOP does great work rehabbing run down properties for non profits, or assisting with painting and landscaping for older folks who cannot do it anymore. They do one big project a month.
I was more or less on the event committee. Kate was hilarious, and in top form. Laughing felt good, even if my joints and bones were achy.
Jamie and I have been swapping Sofie back and forth this weekend, we split the cost of the new sitter. I was desperate to find a new babysitter, I keep hiring excellent ones who are seniors or grad students and then before you know it, they are finished and they leave school. Becca, the new person, is great with Sofie, and most important, Sofie liked her.
Speaking of kids, it was completely blissful last Friday after chemo to be sans child and have time to myself, even if I did not do much with it! I had been pretty much with Sofie the past two weeks full time, so I was ready. I was alone at chemo this time, had rides to and from, but alone there, thanks to Tracey and Betty. I was totally fine, in fact, I wanted to try that out. I watched a movie on the portable player and started another, but then I was done. It was easy and went well, so that was good. Volunteers come around from time to time, bringing beverages or crackers…So I was able to get a diet coke when I wanted one. I brought healthy foods (apples and carrots) for snack and my own coffee, I am so spoiled now, I tote my Peets in the travel cup pretty much everywhere, even out to breakfast.
Now, I long for a massage. And I am planning one, again thanks to Tracey. And I have had wonderful messages, cards and calls from friends. As this is now “one third done” (two of six treatments down), I am feeling quite grateful and appreciative of everyone in my life. (Originally written May 9, 2006)
Bald is, well, a bit of a startle, but, so this has to be better.
I actually got good feedback from some of my faithful readers who saw the photos of the first buzz and told me I looked “hot”. Hot is so not what I feel these days, but I took those compliments to heart and so now, with my totally Melissa E bald head, I am feeling pretty fine. In the house, I just go bare headed. Outside, I sometimes wear what I call “the chemo patient headscarf” but that is ok too.
Today is Tuesday, four days after treatment two. The pain is pretty harsh from Sunday through Tuesday. But otherwise, not too bad in terms of other stuff. Took the anti nausea pill the first night the next day. No nausea. I am grateful every time that happens. Still my worst fear. Saturday, went to breakfast with Jamie and Sofie. Then I took Sofie for a while so Jamie could do an appointment, I went to the Triangle Families parenting conference, and Sofie went to child care there, totally free (which was so nice). When it was lunchtime, I came upstairs to find her helping out with the setting up of the lunch tables, she was quite proud of herself. We had lunch together, and played with the babies after for a while. Then we left to go to the hair place. After that, Loco pops run and then Jamie took her to a kids concert, I went to Costco for one thing (and got a few more, of course) and then went home. I need to rest a bit. That bit of normalcy on a Saturday totally exhausted me. Wore my “cancer patient” head scarf today, leaving Dee Dee to the work days. At home, wearing a bandana, the air was on and my head was cold! I was ready for bed before 6:45 PM. B O R I N G, this life of mine.
I upped my Netflix subscription and saw three films in the past week. And I am caught up on all series (Huff, Big Love, West Wing and Desperate Housewives) that I watch sporadically.
Sunday, on the big drugs, I went to see Kate Clinton in a benefit performance for SWOOP, Strong Women Organizing Outrageous Projects. SWOOP does great work rehabbing run down properties for non profits, or assisting with painting and landscaping for older folks who cannot do it anymore. They do one big project a month.
I was more or less on the event committee. Kate was hilarious, and in top form. Laughing felt good, even if my joints and bones were achy.
Jamie and I have been swapping Sofie back and forth this weekend, we split the cost of the new sitter. I was desperate to find a new babysitter, I keep hiring excellent ones who are seniors or grad students and then before you know it, they are finished and they leave school. Becca, the new person, is great with Sofie, and most important, Sofie liked her.
Speaking of kids, it was completely blissful last Friday after chemo to be sans child and have time to myself, even if I did not do much with it! I had been pretty much with Sofie the past two weeks full time, so I was ready. I was alone at chemo this time, had rides to and from, but alone there, thanks to Tracey and Betty. I was totally fine, in fact, I wanted to try that out. I watched a movie on the portable player and started another, but then I was done. It was easy and went well, so that was good. Volunteers come around from time to time, bringing beverages or crackers…So I was able to get a diet coke when I wanted one. I brought healthy foods (apples and carrots) for snack and my own coffee, I am so spoiled now, I tote my Peets in the travel cup pretty much everywhere, even out to breakfast.
Now, I long for a massage. And I am planning one, again thanks to Tracey. And I have had wonderful messages, cards and calls from friends. As this is now “one third done” (two of six treatments down), I am feeling quite grateful and appreciative of everyone in my life. (Originally written May 9, 2006)
Thursday, May 18, 2006
Ask Little Ms. Science
I cannot take credit for putting it up, but this is the blog that I hope to post my musings (formerly updates) to. I won't just go on and on about the chemo, it will continue to have cute anecdotes about Ms. Sofie, her life is far more amusing than mine.
The last weekend of April, her recent caterpillar obsession came into play and she insisted on bringing one home from the Museum of Life and Science. I quickly fashioned a temporary caterpillar condo, (those gladware disposable things have many additional purposes). I was sure it would be dead by dark, or surely the next morning, but it is Monday night and the little critter is thriving so far, and Sofie has been cooing over it and playing with it and making sure it has leaves and water. So who knows. My mom is sending her a proper butterfly habitat via the Discovery Network, ASAP.
I said something yesterday about it making a cocoon soon and she corrected me, "not a cocoon, Mom, a chrysalis". I am not even sure I spelled that correctly. Evidently, cocoons are for moths, not butterflies. I have lived five decades and did not know this. She is so gentle with this little creature and so sweet. She played with it on her placemat so it would have enough exercise. Then she was singing to it last night before it went to sleep. Um, to bed. Whatever.
The Habitat did arrive and not a moment too soon! “Catty” her caterpillar had actually grown and was being quite responsive to Sofie’s attention. I put her in the habitat (essentially a webbed cylinder with a zipper top and butterfly designs for effect). The next morning, I went to do my early morning check on the critter and it was nowhere. Not in that habitat, not on the table. I almost panicked and then notice that it had indeed that very night, formed a chrysalis and was hanging from the top of the habitat. I think we have a week to ten days, and then it will be a butterfly. Then we plan to (don’t laugh) mail order five more caterpillars. We will set them free a day or two after they emerge when they are butterflies. This was a hard concept as she wanted to keep them all in her room, but I found myself saying something like "butterflies must be free" before I burst into giggles she did not understand.
So, here is the brief story of the photos. Please note the official babushka color of the kerchief is TEAL, but we improvised for now. Teal is not that easy to find, but I am on that.
When I decided I would get my head buzzed, my dear friend Alan offered to do something in solidarity. That turned out to be getting his dog, Kimo, buzzed (AKA, the “summer cut”). The babushka was a stroke of genius. Then Alan himself decided to get buzzed in solidarity. He also mentioned that after visiting his local Castro Street barber, he emerged to admiring glances on Castro Street. Is it any wonder? He looks fabulous.
Then Eileen got her hair cut shorter than she usually does and wrote about the issue of choice in this hair cutting. Then Lisa, who looks about as cute as any adorable little butch girl can, got her hair shorn to about an inch or less. And Lisa has beautiful thick hair. Her cap is what she refers to as “The Brooklyn Babushka”.
When I went to “Lovely Lady”, the wig place to get shorn by the owner, Darlene, Sofie came along and we played with all the hats there and the scarves before the big moment. Beth Wolfe took a ton of pictures, some of which I am sharing here. Sofie and I mugged for the camera, and Sofie took a photo of Beth and I and actually did pretty well.
One funny, ironic thing, is that Sofie’s homework book that night was called (I am not making this up) “The Wig”. We brought it to the place and read it there.
The faces I made during the process were not due to being upset about the shearing, the razor noise was *very* loud and also the hair kept falling into my eyes, my nose and my mouth…..yeeeech. The finished head was pretty startling, and I had not seen my natural color on my head in at least 15 years, possibly 20! You be the judge, but I think it was not as bad as I had feared. In all the excitement, however, I forgot to put on the babushka for the photo shoot. Rest assured, that will happen, I now own at least 8 of them in assorted colors.
I did not think I would do it, but that weekend, I went out in public with my short hair (making sure to wear a dramatic lipstick color as well) and nobody fainted.
Then those little hairs started falling out on Monday at a rapid rate. All over clothes, the pillow, all over everything. Like having five shedding cats. So on Saturday, I stopped by my regular hair place and asked that he buzz it pretty much all off. That night, when I passed a mirror in my home, I was startled, as I guess I forgot that I had done it for a minute there. But now, it is just easier. Dee Dee goes out in the day to work, the rest of the time, head scarf. The wig makes my head hurt after six hours.
The last weekend of April, her recent caterpillar obsession came into play and she insisted on bringing one home from the Museum of Life and Science. I quickly fashioned a temporary caterpillar condo, (those gladware disposable things have many additional purposes). I was sure it would be dead by dark, or surely the next morning, but it is Monday night and the little critter is thriving so far, and Sofie has been cooing over it and playing with it and making sure it has leaves and water. So who knows. My mom is sending her a proper butterfly habitat via the Discovery Network, ASAP.
I said something yesterday about it making a cocoon soon and she corrected me, "not a cocoon, Mom, a chrysalis". I am not even sure I spelled that correctly. Evidently, cocoons are for moths, not butterflies. I have lived five decades and did not know this. She is so gentle with this little creature and so sweet. She played with it on her placemat so it would have enough exercise. Then she was singing to it last night before it went to sleep. Um, to bed. Whatever.
The Habitat did arrive and not a moment too soon! “Catty” her caterpillar had actually grown and was being quite responsive to Sofie’s attention. I put her in the habitat (essentially a webbed cylinder with a zipper top and butterfly designs for effect). The next morning, I went to do my early morning check on the critter and it was nowhere. Not in that habitat, not on the table. I almost panicked and then notice that it had indeed that very night, formed a chrysalis and was hanging from the top of the habitat. I think we have a week to ten days, and then it will be a butterfly. Then we plan to (don’t laugh) mail order five more caterpillars. We will set them free a day or two after they emerge when they are butterflies. This was a hard concept as she wanted to keep them all in her room, but I found myself saying something like "butterflies must be free" before I burst into giggles she did not understand.
So, here is the brief story of the photos. Please note the official babushka color of the kerchief is TEAL, but we improvised for now. Teal is not that easy to find, but I am on that.
When I decided I would get my head buzzed, my dear friend Alan offered to do something in solidarity. That turned out to be getting his dog, Kimo, buzzed (AKA, the “summer cut”). The babushka was a stroke of genius. Then Alan himself decided to get buzzed in solidarity. He also mentioned that after visiting his local Castro Street barber, he emerged to admiring glances on Castro Street. Is it any wonder? He looks fabulous.
Then Eileen got her hair cut shorter than she usually does and wrote about the issue of choice in this hair cutting. Then Lisa, who looks about as cute as any adorable little butch girl can, got her hair shorn to about an inch or less. And Lisa has beautiful thick hair. Her cap is what she refers to as “The Brooklyn Babushka”.
When I went to “Lovely Lady”, the wig place to get shorn by the owner, Darlene, Sofie came along and we played with all the hats there and the scarves before the big moment. Beth Wolfe took a ton of pictures, some of which I am sharing here. Sofie and I mugged for the camera, and Sofie took a photo of Beth and I and actually did pretty well.
One funny, ironic thing, is that Sofie’s homework book that night was called (I am not making this up) “The Wig”. We brought it to the place and read it there.
The faces I made during the process were not due to being upset about the shearing, the razor noise was *very* loud and also the hair kept falling into my eyes, my nose and my mouth…..yeeeech. The finished head was pretty startling, and I had not seen my natural color on my head in at least 15 years, possibly 20! You be the judge, but I think it was not as bad as I had feared. In all the excitement, however, I forgot to put on the babushka for the photo shoot. Rest assured, that will happen, I now own at least 8 of them in assorted colors.
I did not think I would do it, but that weekend, I went out in public with my short hair (making sure to wear a dramatic lipstick color as well) and nobody fainted.
Then those little hairs started falling out on Monday at a rapid rate. All over clothes, the pillow, all over everything. Like having five shedding cats. So on Saturday, I stopped by my regular hair place and asked that he buzz it pretty much all off. That night, when I passed a mirror in my home, I was startled, as I guess I forgot that I had done it for a minute there. But now, it is just easier. Dee Dee goes out in the day to work, the rest of the time, head scarf. The wig makes my head hurt after six hours.
Thursday, April 27, 2006
Ten Good Things about Chemo, a list in progress (Originally written 4/25/2006)
It is later than I should be up, and it is thunder storming outside, good, because once again, I did not water when I should have. I am counting on Mother Nature to help me out these days. So far, so good. Thanks, Mother Nature….keep this up, please.
A couple of things, as it is late (late is now any time after say 9 PM)
I am mostly doing fine, the first chemo was the 14th, so this is about day 12 or so post treatment and I still have hair. Not for long, as it is getting buzzed tomorrow in anticipation of the total loss of hair expected between now and day 15 or 16. I had a moment this AM, while blow-drying my hair as usual, that perhaps I would be the one person in chemo history *not* to lose her hair… Call Guinness Book of Records… yeah, that’ll happen. So tomorrow, on nearly everyone’s good advice, I am going to a supportive person, Darlene who runs “Lovely Lady Boutique” (for people like me) and she will buzz me and style Dee Dee (the wig).
I am accumulating a little collection of hats and scarves and head toppings. I am looking to bulk purchase teal bandanas, as teal is my cancer’s official color. Wish it were purple or fuchsia, but teal it is. This, like many other things, is simply out of my control.
Who knew when those yellow, then red, then pink ribbons appeared, so many years ago, that an industry of sorts was being born. Pretty much, these days, if your disease or issue doesn’t have an official color, you might as well forget about it. I should have invested.
So, the “theme” for the first round of chemo is “chemotherapy is not a walk in the park”. After I had the first treatment on Friday the 14th, it went well, I guess, and then I went home after six hours, where my Mom and I played another game of Scrabble (I beat her this time, but the game, like most of those we played over the next couple of days, was close). I went to sleep a bit early, but was nausea free (thanks to the big GSK drugs) and woke up Saturday AM feeling “normal”. So did the regular Saturday errands, went to a birthday party for twins where they had ponies, you know, normal stuff. Felt pretty darn good. Kept taking the anti nausea drugs as instructed.
Sunday…awoke not nauseous so thought I would try it without the drugs and see how that went. Tried to swing my legs off the bed and holy crap! The most killer pain in my legs and joints/bones!!! Like one of those round metal truck things they use to smooth cement had run over me in my sleep, several times. But sort of from the inside out, not bruises but pain/ache/pain/ache/pain/ache. Took therapeutic doses of Ibuprofen, which did not even touch it. Mid-day I broke down and took big pain pill, leftover from the surgery. Good thing I had a lot leftover, because this pain lasted through Tuesday. I am usually not a pain-wuss, but this was something else. I am so grateful Mom was there, not only for the Scrabble distraction, but she helped a lot with Sofie. Sofie is being pretty darn cooperative about the whole “Mommy is feeling a little uncomfortable today” messaging. Most of the time.
So, the other things they (they is the team, the folks that are now controlling my health, recovery, treatment, whatever). They are concerned about the big drop in my white blood count after one week, (I get blood tests weekly now for the next four or five months) and also my red blood cells. I dropped there too. That accounts for the fatigue I am noticing. I am ok in the day mostly now and don’t need naps as I did during the bad pain time, but I am really tired by say, 8:30-9 PM. Which essentially means:
I put Sofie to bed, and then I put Debra to bed. Not to sleep, I watch HBO or Showtime on demand, or read but essentially I am in for the night. This evening is a huge exception, probably due to the ice cream cone sugar infusion earlier this evening (it was Ben and Jerry Free Cone Day, I had to!!!).
So, a few things to know:
Please do not be offended if I do not answer the home phone (or cell) after 9 PM EST, I could actually be sleeping or resting!
Nobody would guess I am fatigued at all during the day. My energy is still greater than many folks not on any medication during the day. I know I am waning a bit, but it is not all that obvious, I don’t think.
So far, the chemo has not affected my appetite. I am getting worried, if I cannot experience a loss of appetite on chemotherapy, there is no justice in the world. I might have to fake it.
I am starting a list of “Ten Good Things About Chemotherapy” (inspired by a borrowed book called “I would rather do chemo than clean the garage”.
1. No need to shave legs this summer
2. Will save several hundred dollars on haircuts and color
3. I am learning the lost art of scarf tying
4. I can get a lot of sympathy by “pulling the C-card” if I need to
5. I am forgiving myself for not having my house in perfect neat order….”I am just too tired to do it now”
6. Hair care in the morning is about to get a lot easier, I think
That is all I have so far, but I suspect there will be more.
It is funny, I realized the other day that it is completely against my nature to do what I am doing now, turning over my free will to the medical establishment! I did it during the period of my life when I was doing fertility treatments and now, once again, my body is not completely my own. I take enough pills in the AM to substitute for breakfast. And I had to buy the large Costco size of Benefiber. I won’t bore you all with the details.
Now, for the part that some will not want to read….so consider yourself warned!!!
The other part of this whole thing that is a bit overwhelming is the medically induced menopause. Prior to this, although my chronological age was right up there, I simply wasn’t experiencing the symptoms of menopause, even though every medical person assumed or thought I was completely over it!
So imagine my surprise the first morning I woke up around 5:30 AM, sweating and hot. First thought (I swear, this is true) “damnit, I must have left the heat on overnight”.
I padded to the thermostat to squint at it, only to see that it was fine.
But I clearly wasn’t!
Like a time delay process, it dawned on me…..so this is “IT”. Yuck. Maybe it will only happen this one time. Optimist that I am.
It is now happening more, as I was told to expect. They (those medical folks again) cannot really tell me how long this might last, or how severe it might get. So I am just trying to keep a sense of humor about it, breathe through them and consider it just part of the hand I was dealt. We will see how long that lasts. I did pack up all the warm nightwear, as that seems like a silly idea now. I make my own heat!
I admit to being a bit anxious as I face the razor tomorrow. Melissa Etheridge looked hot bald and so did Samantha on Sex and the City (Kim Cattral would look hot with a plaid head). But I am neither of those gals and so I hope I don’t feel too self conscious.
I have started to see bald headed women in more places in the past week or so. Did I simply not notice before?
OK, I really do have to sleep, so good night all. I will let you all know when the blog and the photos are up.
Love to Alan (and his faithful dog Kimo) for shaving their heads (and for Kimo, pretty much the whole dog) in support.
The full photo gallery will follow as soon as I can do it.
Love to all of you who constantly remind me that I am loved and prayed for and the recipient of good, no make that great, energy.
Next chemo I am going solo, but someone will drive me. And I purchased a “summer read” type novel for entertainment.
More about the Care Team next update, I meant to write about that, but it deserves its own update or blog entry. Trust me on that!
YIKES, big thunder, I bet Sofie wakes up and wants to sleep with me.
Chemo is NOT a walk in the park (Originally written 4/16/2006)
Just wanted to quickly update all of you on the days following chemo number
one....Friday was fine, no signs of appetite supression, grazed all day and
into the PM. Played a re-match of Scrabble with Mom and bested her by 38
points....watched movie and had slight sense of "stuff" going through
my body, tingles, nothing much.
Saturday was fine, totally normal. Ah ha! I thought, I am going to sail
through this. Lost Scrabble, but only by one point. Very tired, but it was
11 PM....
Sunday...OUCH! Leg and joint pain, feel like old person (Keep snide
comments to yourselves, girls....) Took super Ibuprofen. Still hurts but
planning walk and hot bathing seems to help a bit. Otherwise, fine.
Sofie looked for and found all her hidden eggs this am. Then we made
pancakes. How very Easter-y.
More later, I am sure there will be more.....ow, my legs feel like I was
kicked hard in a fight...
one....Friday was fine, no signs of appetite supression, grazed all day and
into the PM. Played a re-match of Scrabble with Mom and bested her by 38
points....watched movie and had slight sense of "stuff" going through
my body, tingles, nothing much.
Saturday was fine, totally normal. Ah ha! I thought, I am going to sail
through this. Lost Scrabble, but only by one point. Very tired, but it was
11 PM....
Sunday...OUCH! Leg and joint pain, feel like old person (Keep snide
comments to yourselves, girls....) Took super Ibuprofen. Still hurts but
planning walk and hot bathing seems to help a bit. Otherwise, fine.
Sofie looked for and found all her hidden eggs this am. Then we made
pancakes. How very Easter-y.
More later, I am sure there will be more.....ow, my legs feel like I was
kicked hard in a fight...
Chemo, Round One
(Originally written 4/14/2006)
When faced with something new, unknown and scary, I do what I like to call “going to the dark side”. This is more or less a mental journey that takes into consideration all the very worst things that could happen, if all the side effects went into full tilt boogie at the same time, and if
they were all awful and uncontrollable by any modern medical “cocktails”.
Once I have gone there, I come back to reality, and just let it be. And that is what I did today, day one for chemo. The funny part was that the telephone kept ringing on and off, from 7 am until 8 ish. Sofie got it right “Mom, it is just because people are wanting you to be ok and tell
you they love you” And I was trying to get Sofie up, dressed, hair combed and fed while packing a light snack for the hospital (for my mom more than me), and making sure that I had blankie packed up for tonight, as she is off to be with Jamie “in case” of nausea or whatever.
Then, when Delma (self-designated driver and cancer nurse incognito) arrived, we just left the house, with bags of distractions, snacks, etc.
Dropped off Sofie to Chris who has his daughter Lucie (one year younger than Sofie, see old photo attached) and a seven month old.
Then off to Duke, when I registered ten or so minutes before my appointment, was given a buzzer as if I were at the Cheesecake Factory waiting for a good table, and then nothing….for an hour. Of course, when I went to ask about this, I was in fact, next up on the pile (I could see my chart).
Instead of the chairs we had seen last time, on our stealth visit, I got a hospital bed, complete with ceiling affixed plasma flat screen TV (not with dvd player, sadly) and that was in honor of the first visit. Kathie was my nurse, I only winced a bit when the IV was started, swallowed my starter benedryl without water and awaited the dripping…the Taxol went first, over about two and three quarter hours, then the “carbo” which is the one that can really cause fatigue, they say. I think it will be interesting to see what they mean by fatigue, is that similar to what I experienced the first year of mothering, when I slept an average of four hours a night, usually interrupted and used to mainline Starbucks and Peets? Or as they described it “fatgue like you were hit by a truck” (see explanation previously given). I will wait and see.
Overall, the treatments went without incident of any kind. The pharmacist tried to give me booklets on side effects, but I had pretty much read everything, so I got a few handouts. Good ones, but that was about it.
It was interesting to observe the waiting room. A fair amount of “old” folks (meaning older than me) but also a lot of people younger. And sometimes, I would try to guess who the patient was, only to find out later, while passing a treatment area, that the older woman who was with the woman of about 35 or so with the big frosted hair was the mom or support person and the frosted person was the patient. And the cookies and juice were being consumed by everyone, so that was not a good indicator either…..
It does just support the “this feels surreal” moment or two I have in the clinic. I find myself in the observer role, in Social Worker mode, just wondering about things, making mental notes of things that are good and areas for improvement. But mostly focusing on being there and
accepting the care, niceness and eventually, the intensely person nature of having big toxins intentionally pumped into my veins. Me, who declines Advil most of the time for minor pain. Me, who did not even really do much recreational drugs. Oh well, it is just a phase in my life,
one that I hope will be over without much incident, a bump on the overall journey.
So, to conclude this more brief update, it went well so far, I have anti nausea drugs here at home and I am planning to sit and watch Memoirs of a Geisha for the next few hours, assuming that big truck of fatigue passes me by.
Nice spending time with my mom, too. Although the circumstances could be better!
CT scan on Tuesday was good, not showing lymph involvement. So this chemo is more precautionary. But necessary. 20% done, and let’s see how it goes.
Attached, are two photos of KIMO, wonderful companion to Alan Lessik, shaved in solidarity for my soon to be shaved head. The babushka picture is Alan’s idea of a head garment I hopefully won’t do too much, and Alan, everyone knows you tie it in the back, not under the chin.
For reference, there is a photo of Sofie and KIMO from when she was three and a half or so. She looks like such a baby, but she is tall and grown up now.
When faced with something new, unknown and scary, I do what I like to call “going to the dark side”. This is more or less a mental journey that takes into consideration all the very worst things that could happen, if all the side effects went into full tilt boogie at the same time, and if
they were all awful and uncontrollable by any modern medical “cocktails”.
Once I have gone there, I come back to reality, and just let it be. And that is what I did today, day one for chemo. The funny part was that the telephone kept ringing on and off, from 7 am until 8 ish. Sofie got it right “Mom, it is just because people are wanting you to be ok and tell
you they love you” And I was trying to get Sofie up, dressed, hair combed and fed while packing a light snack for the hospital (for my mom more than me), and making sure that I had blankie packed up for tonight, as she is off to be with Jamie “in case” of nausea or whatever.
Then, when Delma (self-designated driver and cancer nurse incognito) arrived, we just left the house, with bags of distractions, snacks, etc.
Dropped off Sofie to Chris who has his daughter Lucie (one year younger than Sofie, see old photo attached) and a seven month old.
Then off to Duke, when I registered ten or so minutes before my appointment, was given a buzzer as if I were at the Cheesecake Factory waiting for a good table, and then nothing….for an hour. Of course, when I went to ask about this, I was in fact, next up on the pile (I could see my chart).
Instead of the chairs we had seen last time, on our stealth visit, I got a hospital bed, complete with ceiling affixed plasma flat screen TV (not with dvd player, sadly) and that was in honor of the first visit. Kathie was my nurse, I only winced a bit when the IV was started, swallowed my starter benedryl without water and awaited the dripping…the Taxol went first, over about two and three quarter hours, then the “carbo” which is the one that can really cause fatigue, they say. I think it will be interesting to see what they mean by fatigue, is that similar to what I experienced the first year of mothering, when I slept an average of four hours a night, usually interrupted and used to mainline Starbucks and Peets? Or as they described it “fatgue like you were hit by a truck” (see explanation previously given). I will wait and see.
Overall, the treatments went without incident of any kind. The pharmacist tried to give me booklets on side effects, but I had pretty much read everything, so I got a few handouts. Good ones, but that was about it.
It was interesting to observe the waiting room. A fair amount of “old” folks (meaning older than me) but also a lot of people younger. And sometimes, I would try to guess who the patient was, only to find out later, while passing a treatment area, that the older woman who was with the woman of about 35 or so with the big frosted hair was the mom or support person and the frosted person was the patient. And the cookies and juice were being consumed by everyone, so that was not a good indicator either…..
It does just support the “this feels surreal” moment or two I have in the clinic. I find myself in the observer role, in Social Worker mode, just wondering about things, making mental notes of things that are good and areas for improvement. But mostly focusing on being there and
accepting the care, niceness and eventually, the intensely person nature of having big toxins intentionally pumped into my veins. Me, who declines Advil most of the time for minor pain. Me, who did not even really do much recreational drugs. Oh well, it is just a phase in my life,
one that I hope will be over without much incident, a bump on the overall journey.
So, to conclude this more brief update, it went well so far, I have anti nausea drugs here at home and I am planning to sit and watch Memoirs of a Geisha for the next few hours, assuming that big truck of fatigue passes me by.
Nice spending time with my mom, too. Although the circumstances could be better!
CT scan on Tuesday was good, not showing lymph involvement. So this chemo is more precautionary. But necessary. 20% done, and let’s see how it goes.
Attached, are two photos of KIMO, wonderful companion to Alan Lessik, shaved in solidarity for my soon to be shaved head. The babushka picture is Alan’s idea of a head garment I hopefully won’t do too much, and Alan, everyone knows you tie it in the back, not under the chin.
For reference, there is a photo of Sofie and KIMO from when she was three and a half or so. She looks like such a baby, but she is tall and grown up now.
Managing the Moments (Originally written 4/9/2006)
The Medical Stuff
A month ago, just about, I found out that I had a “mass” on my left ovary. The time since then is a blur of doctor visits, multiple co-pays to doctors, radiologists, labs, clinics and the like. None are large, those bills come later. My pharmacist associate at the super market (Courtney) and I are on a first name basis now. She is a babe, under other circumstances……I digress.
So, the quicker fast forward is to simply say that I had, as many of you already know, surgery on the 16th of March, which they did laprascopically, a method that is less invasive of the body overall and has much faster healing (through two small incisions on the belly and via the belly button). The “frozen section” pathology, done during the surgery, was encouraging, and after removal of many internal parts (which I will simply refer to as “girl parts” for the squeamish), I left the hospital with a pretty optimistic prognosis the next day. I never even got a bowl of Jell-O.
I do want to comment about the folks at Duke, who were mostly quite nice and worked well with me and as a team. Except when listening to what I wanted for pain. I asked for Vicodin, which has worked for me in the past, and I tend to take one or two and be done with it. Instead, they offered up Oxy-contin which I recalled hearing about as a new “street drug” on 20/20 or something. Why, I don’t know. They make me sick to my stomach nearly immediately and I rejected all further offerings. I got something else instead, but ended up with lots of Ibuprofen, which is both cheaper and less likely to make me unable to drive.
My sister and dear friend Barbara were home with me for a few days post op and got me through all the recovery, which was actually mostly uneventful. Jamie visited every other day with Sofie. And I prepared to go to a development conference in Las Vegas the following Sunday through Thursday. I left without fanfare on Sunday and returned home Thursday PM, going was totally the right thing to do! And the Kinsey Sicks were at the Hilton, I got to visit with Ben and Irwin. Thanks to Tracey and Sharon, who were, as Sofie called them “the visiting mommies” and moved into my house to care for her for the work week.
Then the pathology report came and things shifted a bit. The “borderline” tumor that you all heard about from Barbara and Nancy (found on frozen pathology at the surgery) was not the final report. Tumors of all sorts have to be “staged”. I have what would be called a Stage 1c Ovarian tumor, graded as such due to the fact that the damn thing burst several days prior to surgery. All other organs were negative for cancer, but this is still more serious than it was if it had not burst. But it did. And so I got more info on the path report (and later, at clinic, from my doctor and nurse, who are pretty cool folks) and found out it ago gets “graded”. I have a Grade 2 tumor, which refers to how organized the cancer cells are. Mine are pretty organized (not as good) but the thing with Ovarian cancer is that most women don’t even find out about it until Stage lll or even IV, which reduces overall chances of survival considerably (although some women do survive Stage III after treatment.
Getting to the point: this means that I have to have chemotherapy, and they wanted it to start soon (meaning next week) and it will be a biggie. The first thoughts I had were not about hair, but about vomiting, which I truly hate more than most things. Interestingly, in a moment I think of as “anticipatory nausea” I got a bit of stomach flu last Saturday. Sofie had been up all night with an ear infection, I had not slept much and woke up feeling punk. On the way to her doctor appointment, I puked my guts out on the ground right near the car. Sofie was totally appalled and proceeded to tell pretty much everyone she saw all day (including strangers at a restaurant) that “My mom threw up stuff that looked like hot dogs on the ground…Eeeeew, GROSS”.
So, as you can see, vomiting is not a popular activity in our household. I realized later that day that since her adoption in April 2002, Sofie has *never* thrown up on my watch or at all from what I know. Pretty amazing. I for sure have jinxed this now, but it was a nice ride.
Last Friday, I went to the Morris Clinic (the cancer clinic at Duke) for my pre-chemo work up. Delma, a friend who is a cancer nurse at UNC came along, incognito, to the appointment. I was very glad she did. Right from the start. I was put in a room and given a sheet/drape and asked to undress. Out of habit, perhaps, I started to unbutton my blouse. Delma gently reminded me that they had no interest in my top parts, just to take off my pants! Good thing she was there, saving me the embarrassment of being totally naked for the appointment!
About the Hair Issue
After a lot of explaining about the side effects (they have to list all of them) and what they as a team could do for me to help, I got a “goodies bag” for patients who are starting chemo. From drug reps of course, but this am I read through all the materials. Mostly quite helpful, but I couldn’t help but wonder, why do the pamphlets have all those pictures of lovely looking people, *with hair and eyebrows* ????? They have caught up with the PC notion of having them all be racially/ethnically diverse, and of different ages, but why not actually show a person not from a stock photo but with actual hair loss? Does GSK or Amgen think I might say “hey, no thanks, I read the booklet and I did not like the way that woman on page 39 looked, so I will skip the treatment, thanks anyway”. Not likely.
So, camera shy as I am, I plan to have some photos taken of this journey. I don’t know that I will send them out with these updates or the blog if I ever get that actually set up (I plan to really try), but I want to record all of this. Make it real.
During the days that followed this appointment, I had a couple of moments of sadness and tears, once when I realized that “hair loss” meant all hair, including eyebrows. That moment of tears while driving to work on Monday morning, gave birth the subject line of the email, which will probably be the ongoing title: Managing the Moments. Because that is, of course, what a lot of this will be about. The tears resolved, I reached out to a dear friend to share that moment went on with my day.
Jamie and I discussed how to tell Sofie more about what is going on with me with her therapist whom we see from time to time. Jane was her usual helpful self and also suggested some good ideas for me, about stocking up on anti-depressants, just in case, and also preparing for the (inevitable) hair loss on my head. The essential messaging here has been along the lines of “Mommy will have to take some strong medicine for that bump in her tummy, to make sure it won’t come back. The medicine might make her sick so she might throw up sometimes or it might make her more tired. And guess what! Mommy’s hair is going to fall out of her head, just like the cat hair. But she is going to get pretend hair for a while”. Along those lines. Sofie has managed absorbing this gracefully and only reacted to the idea of my vomiting again (eeeeew, disgusting).
One piece of advice that was consistent and made sense, was to get the wig before the hair loss happens (which is 10 days to two weeks after the first treatment). I tried first to simply Google wigs cancer Durham NC. But most of the hits were either closed or were not specific to chemo induced hair loss. So again, with a referral from Delma, who knows about these things, I went to “Lovely Lady” boutique on Saturday am, and met Darlene, a wonderful woman who is a wealth of experience, 30 years, of dealing with women on chemo. I also met another woman there, about my age, undergoing treatment for breast cancer. We swapped experiences and honestly, if I had met her at Whole Foods instead of the wig room, I would not have thought she was wearing a wig at all.
Darlene wasted no time in assessing my hair color and measuring my head and brought out a wig for me to try that is a pretty darn good color match (to the “color enhanced” version of my hair) and popped it on. When styled (that happens on the next visit) it should suffice for the short haul. I know those of you who watched “Sex and the City” all remember that Samantha moment when in the middle of a surgically induced hot flash, she yanked off her wig. Well, rest assured I have no such plans in mind. Not a promise, mind you, but no plans.
In about ten days, I will go back to Darlene, she offered to do the buzz cut. I graciously accepted and will, as mentioned, try to get some photos. The wig will be styled to suit me and I will be off to the world of bald.
Sofie expressed interested in watching me get my hair cut off, so she is likely going to come to that appointment with me and see me kind of bald (very short stubble). How many 5.5 year olds have that to talk about in show and tell?
After we agreed on “my” wig, which was presented to me on a little Styrofoam wig head, I played around with the other ones in the store. It was just too tempting. I tried on a hooker looking blond number, a black art student cool looking one, a couple that looked like Suzanne Pleshette in the 70’s and so on It was fun, and convinced me that this was not the time to experiment with another color or style. I want to just kind of pass in the hair department. Now, I will have to work on learning how to “draw” eyebrows. I thought for a brief moment of having them permanently tattooed on, but then panicked: what if they grew back in a different place and for the rest of my days, I had to wax the “real” ones off to keep from looking like a Ringling Brothers clown? Not willing to go there.
For hot days, they advise ditching the wig altogether and wearing head scarves. I have never ever been good with scarves, so I will need coaching here. And their assortment was not to my tastes, either. I asked Darlene if she ever got ones that were less “Amish” (with apologies, no insults meant here), they only had ones with little floral patterns in dark colors at the store. She assured me they were getting more in that I would like. So I hope so, because when we are sweating it out in Disneyworld over Memorial Day weekend, I would like not to resemble the fashion style of Wife Number Two on “Big Love”. (Those of you without HBO, look it up). I will even have a little cozy hat to wear at bedtime, if needed.
So, after bringing the wig home, I decided to name it/her since “the wig” sounds so impersonal. And I will be having a long relationship with this piece of synthetic hair…at least five months or so, possibly longer, until my hair starts to really grow out. Her name is now officially Dee Dee. My alter ego? Not quite sure, but I will be getting a lot of practice with her.
So, before I close this long report, I have to say that one of the more disheartening things I heard this past week about chemo was that it does not always mean weight loss. That really affected me, if I cannot even lose weight while having chemotherapy, I might as well give up the entire idea. So my plan is to follow the eating guidelines to have little meals, but to make sure that I don’t turn to my “drugs of choice” (ice cream and other sweets) for comfort.
But Seriously
As you are reading, I am approaching this phase in my life with humor, but also trying to stay focused on living each day at a time. Enjoying the wonderful things too, like the fact that somewhere in the past month, Sofie started drawing realistic looking (for a kid) figures, not scribble scrabble ones. And that she is a wonderful, compassionate child, who wanted to take care of me the day I had stomach flu or whatever that was. So sweet, she rubbed my back like I do for her when she is sick.
I just love her to bits. I am being careful not to say “cancer” to her at this juncture, or “chemo” because those are loaded big words and might be misinterpreted by well meaning teachers or other parents, and she might get a more negative message. So I am saying “medicine” and “treatment” and the like. Hopefully it will be a serious of moments to be managed. Mostly I am concerned about managing the huge co-pay bills now coming in, but will work on a payment plan. My insurance plan is not all it was cracked up to be, that is for sure. But they never are. Hillary Clinton, get to work on universal health care bills, please.
I want to say, at closing, that the love and support, via emails, and cards, and good thoughts I have received have been abundant and welcome. I feel that one of the many lessons that will come out of all this is my increased ability to receive love. That has to be a good thing.
I have not even begun to discuss the joys of a medically induced menopause, that will be later. So far, actually not too bad. But there are months to go!!!
I will write more soon, probably after the first treatment. My mom is coming for her first visit next week, planned six months ago, and this is a comfort, even though spending five hours in chemotherapy treatment room was not on my to do list for the visit. Hopefully we will feel better enough to do more over the weekend and while she is here. I hope so.
My love and thanks to all of you.
A month ago, just about, I found out that I had a “mass” on my left ovary. The time since then is a blur of doctor visits, multiple co-pays to doctors, radiologists, labs, clinics and the like. None are large, those bills come later. My pharmacist associate at the super market (Courtney) and I are on a first name basis now. She is a babe, under other circumstances……I digress.
So, the quicker fast forward is to simply say that I had, as many of you already know, surgery on the 16th of March, which they did laprascopically, a method that is less invasive of the body overall and has much faster healing (through two small incisions on the belly and via the belly button). The “frozen section” pathology, done during the surgery, was encouraging, and after removal of many internal parts (which I will simply refer to as “girl parts” for the squeamish), I left the hospital with a pretty optimistic prognosis the next day. I never even got a bowl of Jell-O.
I do want to comment about the folks at Duke, who were mostly quite nice and worked well with me and as a team. Except when listening to what I wanted for pain. I asked for Vicodin, which has worked for me in the past, and I tend to take one or two and be done with it. Instead, they offered up Oxy-contin which I recalled hearing about as a new “street drug” on 20/20 or something. Why, I don’t know. They make me sick to my stomach nearly immediately and I rejected all further offerings. I got something else instead, but ended up with lots of Ibuprofen, which is both cheaper and less likely to make me unable to drive.
My sister and dear friend Barbara were home with me for a few days post op and got me through all the recovery, which was actually mostly uneventful. Jamie visited every other day with Sofie. And I prepared to go to a development conference in Las Vegas the following Sunday through Thursday. I left without fanfare on Sunday and returned home Thursday PM, going was totally the right thing to do! And the Kinsey Sicks were at the Hilton, I got to visit with Ben and Irwin. Thanks to Tracey and Sharon, who were, as Sofie called them “the visiting mommies” and moved into my house to care for her for the work week.
Then the pathology report came and things shifted a bit. The “borderline” tumor that you all heard about from Barbara and Nancy (found on frozen pathology at the surgery) was not the final report. Tumors of all sorts have to be “staged”. I have what would be called a Stage 1c Ovarian tumor, graded as such due to the fact that the damn thing burst several days prior to surgery. All other organs were negative for cancer, but this is still more serious than it was if it had not burst. But it did. And so I got more info on the path report (and later, at clinic, from my doctor and nurse, who are pretty cool folks) and found out it ago gets “graded”. I have a Grade 2 tumor, which refers to how organized the cancer cells are. Mine are pretty organized (not as good) but the thing with Ovarian cancer is that most women don’t even find out about it until Stage lll or even IV, which reduces overall chances of survival considerably (although some women do survive Stage III after treatment.
Getting to the point: this means that I have to have chemotherapy, and they wanted it to start soon (meaning next week) and it will be a biggie. The first thoughts I had were not about hair, but about vomiting, which I truly hate more than most things. Interestingly, in a moment I think of as “anticipatory nausea” I got a bit of stomach flu last Saturday. Sofie had been up all night with an ear infection, I had not slept much and woke up feeling punk. On the way to her doctor appointment, I puked my guts out on the ground right near the car. Sofie was totally appalled and proceeded to tell pretty much everyone she saw all day (including strangers at a restaurant) that “My mom threw up stuff that looked like hot dogs on the ground…Eeeeew, GROSS”.
So, as you can see, vomiting is not a popular activity in our household. I realized later that day that since her adoption in April 2002, Sofie has *never* thrown up on my watch or at all from what I know. Pretty amazing. I for sure have jinxed this now, but it was a nice ride.
Last Friday, I went to the Morris Clinic (the cancer clinic at Duke) for my pre-chemo work up. Delma, a friend who is a cancer nurse at UNC came along, incognito, to the appointment. I was very glad she did. Right from the start. I was put in a room and given a sheet/drape and asked to undress. Out of habit, perhaps, I started to unbutton my blouse. Delma gently reminded me that they had no interest in my top parts, just to take off my pants! Good thing she was there, saving me the embarrassment of being totally naked for the appointment!
About the Hair Issue
After a lot of explaining about the side effects (they have to list all of them) and what they as a team could do for me to help, I got a “goodies bag” for patients who are starting chemo. From drug reps of course, but this am I read through all the materials. Mostly quite helpful, but I couldn’t help but wonder, why do the pamphlets have all those pictures of lovely looking people, *with hair and eyebrows* ????? They have caught up with the PC notion of having them all be racially/ethnically diverse, and of different ages, but why not actually show a person not from a stock photo but with actual hair loss? Does GSK or Amgen think I might say “hey, no thanks, I read the booklet and I did not like the way that woman on page 39 looked, so I will skip the treatment, thanks anyway”. Not likely.
So, camera shy as I am, I plan to have some photos taken of this journey. I don’t know that I will send them out with these updates or the blog if I ever get that actually set up (I plan to really try), but I want to record all of this. Make it real.
During the days that followed this appointment, I had a couple of moments of sadness and tears, once when I realized that “hair loss” meant all hair, including eyebrows. That moment of tears while driving to work on Monday morning, gave birth the subject line of the email, which will probably be the ongoing title: Managing the Moments. Because that is, of course, what a lot of this will be about. The tears resolved, I reached out to a dear friend to share that moment went on with my day.
Jamie and I discussed how to tell Sofie more about what is going on with me with her therapist whom we see from time to time. Jane was her usual helpful self and also suggested some good ideas for me, about stocking up on anti-depressants, just in case, and also preparing for the (inevitable) hair loss on my head. The essential messaging here has been along the lines of “Mommy will have to take some strong medicine for that bump in her tummy, to make sure it won’t come back. The medicine might make her sick so she might throw up sometimes or it might make her more tired. And guess what! Mommy’s hair is going to fall out of her head, just like the cat hair. But she is going to get pretend hair for a while”. Along those lines. Sofie has managed absorbing this gracefully and only reacted to the idea of my vomiting again (eeeeew, disgusting).
One piece of advice that was consistent and made sense, was to get the wig before the hair loss happens (which is 10 days to two weeks after the first treatment). I tried first to simply Google wigs cancer Durham NC. But most of the hits were either closed or were not specific to chemo induced hair loss. So again, with a referral from Delma, who knows about these things, I went to “Lovely Lady” boutique on Saturday am, and met Darlene, a wonderful woman who is a wealth of experience, 30 years, of dealing with women on chemo. I also met another woman there, about my age, undergoing treatment for breast cancer. We swapped experiences and honestly, if I had met her at Whole Foods instead of the wig room, I would not have thought she was wearing a wig at all.
Darlene wasted no time in assessing my hair color and measuring my head and brought out a wig for me to try that is a pretty darn good color match (to the “color enhanced” version of my hair) and popped it on. When styled (that happens on the next visit) it should suffice for the short haul. I know those of you who watched “Sex and the City” all remember that Samantha moment when in the middle of a surgically induced hot flash, she yanked off her wig. Well, rest assured I have no such plans in mind. Not a promise, mind you, but no plans.
In about ten days, I will go back to Darlene, she offered to do the buzz cut. I graciously accepted and will, as mentioned, try to get some photos. The wig will be styled to suit me and I will be off to the world of bald.
Sofie expressed interested in watching me get my hair cut off, so she is likely going to come to that appointment with me and see me kind of bald (very short stubble). How many 5.5 year olds have that to talk about in show and tell?
After we agreed on “my” wig, which was presented to me on a little Styrofoam wig head, I played around with the other ones in the store. It was just too tempting. I tried on a hooker looking blond number, a black art student cool looking one, a couple that looked like Suzanne Pleshette in the 70’s and so on It was fun, and convinced me that this was not the time to experiment with another color or style. I want to just kind of pass in the hair department. Now, I will have to work on learning how to “draw” eyebrows. I thought for a brief moment of having them permanently tattooed on, but then panicked: what if they grew back in a different place and for the rest of my days, I had to wax the “real” ones off to keep from looking like a Ringling Brothers clown? Not willing to go there.
For hot days, they advise ditching the wig altogether and wearing head scarves. I have never ever been good with scarves, so I will need coaching here. And their assortment was not to my tastes, either. I asked Darlene if she ever got ones that were less “Amish” (with apologies, no insults meant here), they only had ones with little floral patterns in dark colors at the store. She assured me they were getting more in that I would like. So I hope so, because when we are sweating it out in Disneyworld over Memorial Day weekend, I would like not to resemble the fashion style of Wife Number Two on “Big Love”. (Those of you without HBO, look it up). I will even have a little cozy hat to wear at bedtime, if needed.
So, after bringing the wig home, I decided to name it/her since “the wig” sounds so impersonal. And I will be having a long relationship with this piece of synthetic hair…at least five months or so, possibly longer, until my hair starts to really grow out. Her name is now officially Dee Dee. My alter ego? Not quite sure, but I will be getting a lot of practice with her.
So, before I close this long report, I have to say that one of the more disheartening things I heard this past week about chemo was that it does not always mean weight loss. That really affected me, if I cannot even lose weight while having chemotherapy, I might as well give up the entire idea. So my plan is to follow the eating guidelines to have little meals, but to make sure that I don’t turn to my “drugs of choice” (ice cream and other sweets) for comfort.
But Seriously
As you are reading, I am approaching this phase in my life with humor, but also trying to stay focused on living each day at a time. Enjoying the wonderful things too, like the fact that somewhere in the past month, Sofie started drawing realistic looking (for a kid) figures, not scribble scrabble ones. And that she is a wonderful, compassionate child, who wanted to take care of me the day I had stomach flu or whatever that was. So sweet, she rubbed my back like I do for her when she is sick.
I just love her to bits. I am being careful not to say “cancer” to her at this juncture, or “chemo” because those are loaded big words and might be misinterpreted by well meaning teachers or other parents, and she might get a more negative message. So I am saying “medicine” and “treatment” and the like. Hopefully it will be a serious of moments to be managed. Mostly I am concerned about managing the huge co-pay bills now coming in, but will work on a payment plan. My insurance plan is not all it was cracked up to be, that is for sure. But they never are. Hillary Clinton, get to work on universal health care bills, please.
I want to say, at closing, that the love and support, via emails, and cards, and good thoughts I have received have been abundant and welcome. I feel that one of the many lessons that will come out of all this is my increased ability to receive love. That has to be a good thing.
I have not even begun to discuss the joys of a medically induced menopause, that will be later. So far, actually not too bad. But there are months to go!!!
I will write more soon, probably after the first treatment. My mom is coming for her first visit next week, planned six months ago, and this is a comfort, even though spending five hours in chemotherapy treatment room was not on my to do list for the visit. Hopefully we will feel better enough to do more over the weekend and while she is here. I hope so.
My love and thanks to all of you.
Fast Forward, One Month (Originally written 3/11/2006)
What a difference a month makes. The A, B, C's of parenting from last month was a theme I planned to continue for a bit, so perhaps I will. But I might skip to another letter in this update, S. Keep reading, I will get there.
I realized when I sent the update in February that I had forgotten another of the C's...
C is for CAMP and the challenges of summer....
Who knew, when applying for international adoption of my adorable toddler girl, the challenges that summer would bring post pre-school/daycare days. I guess I just had not thought this all out, but the public school system is not year round! Duh. So I was a little taken aback when advised by a more seasoned parent (who has a first grader), that the selection of summer camps has to begin early. Like in December for some of the more popular ones.
There are books and magazines and of course, websites for all this. But it is daunting none the less. I decided that I would try a few camps for her this year, since I am not quite sure what she will like. One is a three week camp that my friend's daughter went to, a "pure camp experience" and Sofie is registered for three weeks, mid-summer. Then I filled in with the life and science museum camp for at least a week and then mostly YMCA camp. She goes to the Y programs during the school days off (schools close for "teacher workdays" and holidays that UNC does not seem to recognize, so additional care is always needed on these days). The Y is great, she skates, swims, uses the gym and comes home worn out and happy.
And it is close to our neighborhood, and on the way to work, so it is almost ideal. Except this is the south, so the C in
Y M C A is a bigger deal here than say, in Berkeley where you have to really look to see what it means at all. The pool area is festooned with messages about G_d, and there are other messages more subtle but ever present about developing Christian values and character. I had a talk with one of the program managers, Gordon, a fresh faced, earnest young man who seemed to get that I had some concerns about over-doing the Christian aspects of the YMCA in programming. He was pretty reassuring that this was not heavy handed, but there was something in his affect (reminded me of those earnest missionary people in the Downtown SF area, smiling at you as they attempt to stuff booklets into your hands...they look so sincere, but they also were a little too Clockwork Orange for my taste...maybe it was their suits). Anyway, Gordon and I reached some sort of understanding, and to be honest, the convenience, price and all round location of the program won out.
So, hopefully, the full summer is scheduled with camp experiences. And Sofie will surely tell me which she likes the most. I know that developing friendships is important as she is getting older. And so being at the YMCA will hopefully make that a bit easier, with some consistency.
So, now for the other letter in this update: S is for surgery.
Last week, I found out that I have a "mass" on one of my ovaries. Not small either, about the size of a grapefruit (small grapefruit, but all the same.....). In a matter of days, I went from my perception of myself as doing pretty well, health-wise, to "patient". It started the moment I walked through the doors of the Morris Cancer Clinic at Duke. Yep, there are the "CLINICS" and then this special door. Why, I am not sure, but it is creepy that even "suspected" cancer patients have to enter through a special door, in a different area to get to see their doctor. But as soon as I crossed that threshold, I felt a subtle but real transformation from person to patient. I got there at 8 am. I left the clinics at 2:30, scheduled for surgery the following Thursday and having had myself EKG'ed, chest x-rayed, blood drawn, examined by a number of various folks in the pre-op area and all that. I did my best to keep a sense of humor throughout, as those of you who know me might imagine. For example, my height and weight was recorded in the gyne-oncology clinic by one nursing assistant. An hour later, Lisa in the pre-op area told me to stand on the scale and be measured and weighed. I mentioned that in fact that had just been done. But evidently, one floor does not trust the measuring of the other, so on I went. Sadly, the weight did not change, but I seemed to have grown a half inch in the hour between measuring. So that was good, I guess.
Everyone was nice, it is a big research center, just like UCSF or any other big place, so I signed two or three forms consenting to be in this study and that tissue bank and all that. The very last person, a nurse assigned to get me to consider giving tissue samples to their tissue bank, was unexpectedly the one who finally, gently and without much fanfare, acknowledged that this day must have been hard and that the surgery must be scary. And she was so right. She shared some wisdom from her mama, about letting go on some things, and I found myself relaxing just a bit.
Interestingly, I had not been able to shed a tear from Monday, when this all began, until Thursday PM, when I watched the DVD of RENT. From the opening song, I just let the tears flow. It was quite cathartic and I felt like now I can deal with the logistics of all of this, getting help (thanks to Barbara and my sister) and support from friends (you have all been wonderful and I can literally feel the energy coming from West Coast to East Coast). The lesson learned for me, from this, is that I have in fact, learned to ask for help. A big deal for me as some of you might know.
So now, I have to tell Sofie this weekend. Will put this into simple, clear and 5 year old language...an operation at the hospital to take out a lump in my body that should not be there. Hopefully she will be able to see me on Thursday night or Friday. And we will retain as much "routine" which is the best thing for a little person. But I imagine she might be worried. She is kind of intuitive, I have found. And if she is, she will know that my darkest thoughts have been about not being able to see her grow up. I cannot imagine that. I am trying to stay positive, at the same time, signing legal documents, getting paperwork together, etc. Very complex and also a good distracting project to take my mind off things sort of, for a little while. There is not much time to organize all of this, but you know I love a good project and a deadline to motivate me. So I am writing, clearing things off of piles, etc.
Did I mention this sucks?
Hopefully, the outcome will be a benign mass, a quick recovery and a much more organized office and guest room.
I will keep you all posted. Barbara might use this list to update you all after the surgery or later in the week.
I love you all and thank you for your support. And I believe in the healing power of energy. So send that this way.
I realized when I sent the update in February that I had forgotten another of the C's...
C is for CAMP and the challenges of summer....
Who knew, when applying for international adoption of my adorable toddler girl, the challenges that summer would bring post pre-school/daycare days. I guess I just had not thought this all out, but the public school system is not year round! Duh. So I was a little taken aback when advised by a more seasoned parent (who has a first grader), that the selection of summer camps has to begin early. Like in December for some of the more popular ones.
There are books and magazines and of course, websites for all this. But it is daunting none the less. I decided that I would try a few camps for her this year, since I am not quite sure what she will like. One is a three week camp that my friend's daughter went to, a "pure camp experience" and Sofie is registered for three weeks, mid-summer. Then I filled in with the life and science museum camp for at least a week and then mostly YMCA camp. She goes to the Y programs during the school days off (schools close for "teacher workdays" and holidays that UNC does not seem to recognize, so additional care is always needed on these days). The Y is great, she skates, swims, uses the gym and comes home worn out and happy.
And it is close to our neighborhood, and on the way to work, so it is almost ideal. Except this is the south, so the C in
Y M C A is a bigger deal here than say, in Berkeley where you have to really look to see what it means at all. The pool area is festooned with messages about G_d, and there are other messages more subtle but ever present about developing Christian values and character. I had a talk with one of the program managers, Gordon, a fresh faced, earnest young man who seemed to get that I had some concerns about over-doing the Christian aspects of the YMCA in programming. He was pretty reassuring that this was not heavy handed, but there was something in his affect (reminded me of those earnest missionary people in the Downtown SF area, smiling at you as they attempt to stuff booklets into your hands...they look so sincere, but they also were a little too Clockwork Orange for my taste...maybe it was their suits). Anyway, Gordon and I reached some sort of understanding, and to be honest, the convenience, price and all round location of the program won out.
So, hopefully, the full summer is scheduled with camp experiences. And Sofie will surely tell me which she likes the most. I know that developing friendships is important as she is getting older. And so being at the YMCA will hopefully make that a bit easier, with some consistency.
So, now for the other letter in this update: S is for surgery.
Last week, I found out that I have a "mass" on one of my ovaries. Not small either, about the size of a grapefruit (small grapefruit, but all the same.....). In a matter of days, I went from my perception of myself as doing pretty well, health-wise, to "patient". It started the moment I walked through the doors of the Morris Cancer Clinic at Duke. Yep, there are the "CLINICS" and then this special door. Why, I am not sure, but it is creepy that even "suspected" cancer patients have to enter through a special door, in a different area to get to see their doctor. But as soon as I crossed that threshold, I felt a subtle but real transformation from person to patient. I got there at 8 am. I left the clinics at 2:30, scheduled for surgery the following Thursday and having had myself EKG'ed, chest x-rayed, blood drawn, examined by a number of various folks in the pre-op area and all that. I did my best to keep a sense of humor throughout, as those of you who know me might imagine. For example, my height and weight was recorded in the gyne-oncology clinic by one nursing assistant. An hour later, Lisa in the pre-op area told me to stand on the scale and be measured and weighed. I mentioned that in fact that had just been done. But evidently, one floor does not trust the measuring of the other, so on I went. Sadly, the weight did not change, but I seemed to have grown a half inch in the hour between measuring. So that was good, I guess.
Everyone was nice, it is a big research center, just like UCSF or any other big place, so I signed two or three forms consenting to be in this study and that tissue bank and all that. The very last person, a nurse assigned to get me to consider giving tissue samples to their tissue bank, was unexpectedly the one who finally, gently and without much fanfare, acknowledged that this day must have been hard and that the surgery must be scary. And she was so right. She shared some wisdom from her mama, about letting go on some things, and I found myself relaxing just a bit.
Interestingly, I had not been able to shed a tear from Monday, when this all began, until Thursday PM, when I watched the DVD of RENT. From the opening song, I just let the tears flow. It was quite cathartic and I felt like now I can deal with the logistics of all of this, getting help (thanks to Barbara and my sister) and support from friends (you have all been wonderful and I can literally feel the energy coming from West Coast to East Coast). The lesson learned for me, from this, is that I have in fact, learned to ask for help. A big deal for me as some of you might know.
So now, I have to tell Sofie this weekend. Will put this into simple, clear and 5 year old language...an operation at the hospital to take out a lump in my body that should not be there. Hopefully she will be able to see me on Thursday night or Friday. And we will retain as much "routine" which is the best thing for a little person. But I imagine she might be worried. She is kind of intuitive, I have found. And if she is, she will know that my darkest thoughts have been about not being able to see her grow up. I cannot imagine that. I am trying to stay positive, at the same time, signing legal documents, getting paperwork together, etc. Very complex and also a good distracting project to take my mind off things sort of, for a little while. There is not much time to organize all of this, but you know I love a good project and a deadline to motivate me. So I am writing, clearing things off of piles, etc.
Did I mention this sucks?
Hopefully, the outcome will be a benign mass, a quick recovery and a much more organized office and guest room.
I will keep you all posted. Barbara might use this list to update you all after the surgery or later in the week.
I love you all and thank you for your support. And I believe in the healing power of energy. So send that this way.
The ABC's of parenting today (Originally written 2/13/2006)
So, it was more than a week, what a surprise! It is hard to get back in the once a week mode of writing. So where to begin? Turning to Sue Grafton for inspiration, I will loosely use the A, B and C method this time to update you on some funny and not so funny things!
First, A is for Attitude
Whoever thought a five and a half year old (official on February 2nd and don’t you forget it!) could have this much attitude!? It is sometimes subtle, in the way she says “maaaaaam” and sort of rolls those baby blues. Sometimes less so, as when she told Jamie a week or so ago that I told her that she (Jamie) was not her mom and that I was lying (and that lying is not a good idea). Jeez. It is tough to explain the nuances of single legal parenting to a kid, you know? She keeps trying on different ideas for shared visitation:
How about if I stay with you tonight, and Jamie tomorrow and you the tomorrow after tomorrow and then Jamie the two tomorrows after and……?
What if I stayed with you all week and spent weekends at the condo? (Jamie’s condo). That is fair, right?
Mom (whined not spoken)…it isn’t fair when…..(fill in the blanks).
Poor kid, she loves us both, tells us what we want to hear sometimes (“Mom, I love you the bestest ever ever”) and pines for what she does not have.
It is hard enough to keep track of what stuffed animal is currently residing in which home. I trust her to know more than I do.
But then I soften, last night she spiked a 102.4 temp and I kept her at my side in my bed, all night, worrying about febrile seizures (she had one over two years ago) and waking frequently due to kicks, legs sticking in my ribs, etc. How can someone who weighs under 40 pounds strike such a punch? Yeow! At least she doesn’t shed, Gracie, our “plump” cat, walks on me too, and sheds constantly. I choose the kicker with the high temp any day of the week.
B is for Boyfriend (and Birthday)
So, about a week and a half ago, Sofie is in the back of the car, where we have most of our more philosophical chats, and she says, kind of out of the blue, “Mom, you know what? I have a boyfriend”. I counter (calmly of course), “you mean you have a friend who is a boy? That’s nice”. “No, mom, (exasperation in voice), I have a boyfriend. You know. (well, actually, I don’t know. What exactly constitutes a boyfriend at five and a half?). So I ask her, what does that mean to have a boyfriend? What do you do? And she responds: “well, we play together and read together and laugh and sometimes we have recess together and play”. Relieved, I support her with interest. “That’s great. And what is your boyfriend’s name?” “I forget” she says. Whew. I guess they are not doing anything that special not just yet.
It has been interesting this week, however. We got into a discussion of sameness and difference with people. She said we looked “the same”. I asked her why she thought that and she said our noses were the same and our eyes. I pointed out that mine were brown and hers blue-grey, but that parents and kids did not need to look anything alike or friends either to have those relationships. She thought about this a bit, and responded that “yeah, that is right. Sheldon is different and we are friends”. Sheldon is an African American boy in her class. (I suspect he may be the “boyfriend”). I probed a bit about those differences. “Well, mom, Sheldon doesn’t have a lot of hair, and I do” was her response. You gotta love the blank slates that our kids start out with. Appreciating differences is a Montessori value, at her school and she is learning a lot. She came home singing a song last week:
Everybody, everybody, out to (sic, ought to) know freedom
Everybody, everybody out to know justice
Everybody, everybody out to know friendship
It is sweet, she frequently sings to herself while playing. Tonight, she sang this to me in her voice and then in a cute high pitched voice, she sang it for her blankie. I wish I had not written that, that she was totally over this object of her affection, but I am beginning to think she will be packing it when she goes to college. It made me smile, however, to hear her sing it in a totally different pitch for the blanket.
Oh, and the birthday B is so sweet. I had a very quiet birthday last week, Sofie and I ate out at Whole Foods little café (a whopping $5.86 for both of us, she gets salad bar and pasta but such a small portion that it costs under $2.00 and I got soup and a roll). Then she picked out the most huge frosted chocolate cupcakes to take home for candles. That day, my actual birthday, she learned to zip up her jacket solo, so I told her that was a great present for me. Her response (and it still makes me smile)…Mommy, I am your present…with a big kiss to seal the deal. Best present ever.
C is for Challenges and Ccccchange
I am still trying to figure out if I/we need to move back to California. Day to day, life is manageable, if somewhat boring (by my bay area standards, I guess). Unremarkable, perhaps? I find myself looking smaller signs of good things, and finding them in little things, realizing I know several ways to get to a destination, without Map quest. That the cold days don’t seem as cold as last year. That I kind of like the way the house looks most of the time. That Sofie is growing and changing in all sorts of lovely ways. That I don’t mind not going out three nights a week.
But I miss the company of friends, I miss gay men (I don’t have any gay male friends here at all!) And nary a black tie event to even consider. This year, for the first time in 20 years (since 1986) I will be watching the Oscars in my bedroom slippers and not in black satin. Yep, I am unable to go to the Academy of Friends this year. So it will be a novelty, to watch from home. I might have to bring in some gourmet food and wine, so the withdrawal is not so painful!!! And perhaps I will wear my pj’s but with heels.
I miss that feeling that there are all sorts of possibilities out there, even if I am not attending them. I am totally happy with Netflix and the occasional movie in a theater. I have started reading again, which I love and missed. But sometimes…..
And I miss that feeling of familiar. The feeling you have after 20 years in the same place. The weather. The bay area-ness of it all.
But then I think about “retirement”. Whatever and whenever that might happen. And I think that I won’t be able to live in the bay area then, not with a small retirement income and no house. So what would make more sense? I really love Asheville. (Western NC). My good friends Jacque and Barbara are there, living a lovely life (no kids) and always welcoming. It is a place with beauty, cultural arts, some but not tons of snow in the winter and not so many hot sticky nights in summer. Not a bad option, eh? So that is a new train of thought. If I moved “back” to CA for now, rented and perhaps bought a house for my future in NC, in Asheville.
The thought of not having my own house, after nearly a decade of owning one, is hard to handle. I know what a fortunate person I was to have done that in the bay area, and I mourn my lovely home in Oakland. But it is more than that. Renting doesn’t seem settled, somehow. And so far, the only places to rent I have investigated are from $1750 to $2100 for not so much space, less than 1200 square feet. So it is hard to let this less expensive option here go.
Everyone who has written and been so incredibly supportive, I thank you. Don’t stop! And if I start driving you nuts with my indecision or my process, let me know, gently and I will try to stop.
And, if I have not mentioned it, you are all welcome to visit. One or two at a time, of course.
OK, must stop for now and go check her temperature again. She was down to 99.8 before she fell asleep, but that was the Ibuprofen, I suspect.
Love and happy Valentine’s day.
First, A is for Attitude
Whoever thought a five and a half year old (official on February 2nd and don’t you forget it!) could have this much attitude!? It is sometimes subtle, in the way she says “maaaaaam” and sort of rolls those baby blues. Sometimes less so, as when she told Jamie a week or so ago that I told her that she (Jamie) was not her mom and that I was lying (and that lying is not a good idea). Jeez. It is tough to explain the nuances of single legal parenting to a kid, you know? She keeps trying on different ideas for shared visitation:
How about if I stay with you tonight, and Jamie tomorrow and you the tomorrow after tomorrow and then Jamie the two tomorrows after and……?
What if I stayed with you all week and spent weekends at the condo? (Jamie’s condo). That is fair, right?
Mom (whined not spoken)…it isn’t fair when…..(fill in the blanks).
Poor kid, she loves us both, tells us what we want to hear sometimes (“Mom, I love you the bestest ever ever”) and pines for what she does not have.
It is hard enough to keep track of what stuffed animal is currently residing in which home. I trust her to know more than I do.
But then I soften, last night she spiked a 102.4 temp and I kept her at my side in my bed, all night, worrying about febrile seizures (she had one over two years ago) and waking frequently due to kicks, legs sticking in my ribs, etc. How can someone who weighs under 40 pounds strike such a punch? Yeow! At least she doesn’t shed, Gracie, our “plump” cat, walks on me too, and sheds constantly. I choose the kicker with the high temp any day of the week.
B is for Boyfriend (and Birthday)
So, about a week and a half ago, Sofie is in the back of the car, where we have most of our more philosophical chats, and she says, kind of out of the blue, “Mom, you know what? I have a boyfriend”. I counter (calmly of course), “you mean you have a friend who is a boy? That’s nice”. “No, mom, (exasperation in voice), I have a boyfriend. You know. (well, actually, I don’t know. What exactly constitutes a boyfriend at five and a half?). So I ask her, what does that mean to have a boyfriend? What do you do? And she responds: “well, we play together and read together and laugh and sometimes we have recess together and play”. Relieved, I support her with interest. “That’s great. And what is your boyfriend’s name?” “I forget” she says. Whew. I guess they are not doing anything that special not just yet.
It has been interesting this week, however. We got into a discussion of sameness and difference with people. She said we looked “the same”. I asked her why she thought that and she said our noses were the same and our eyes. I pointed out that mine were brown and hers blue-grey, but that parents and kids did not need to look anything alike or friends either to have those relationships. She thought about this a bit, and responded that “yeah, that is right. Sheldon is different and we are friends”. Sheldon is an African American boy in her class. (I suspect he may be the “boyfriend”). I probed a bit about those differences. “Well, mom, Sheldon doesn’t have a lot of hair, and I do” was her response. You gotta love the blank slates that our kids start out with. Appreciating differences is a Montessori value, at her school and she is learning a lot. She came home singing a song last week:
Everybody, everybody, out to (sic, ought to) know freedom
Everybody, everybody out to know justice
Everybody, everybody out to know friendship
It is sweet, she frequently sings to herself while playing. Tonight, she sang this to me in her voice and then in a cute high pitched voice, she sang it for her blankie. I wish I had not written that, that she was totally over this object of her affection, but I am beginning to think she will be packing it when she goes to college. It made me smile, however, to hear her sing it in a totally different pitch for the blanket.
Oh, and the birthday B is so sweet. I had a very quiet birthday last week, Sofie and I ate out at Whole Foods little café (a whopping $5.86 for both of us, she gets salad bar and pasta but such a small portion that it costs under $2.00 and I got soup and a roll). Then she picked out the most huge frosted chocolate cupcakes to take home for candles. That day, my actual birthday, she learned to zip up her jacket solo, so I told her that was a great present for me. Her response (and it still makes me smile)…Mommy, I am your present…with a big kiss to seal the deal. Best present ever.
C is for Challenges and Ccccchange
I am still trying to figure out if I/we need to move back to California. Day to day, life is manageable, if somewhat boring (by my bay area standards, I guess). Unremarkable, perhaps? I find myself looking smaller signs of good things, and finding them in little things, realizing I know several ways to get to a destination, without Map quest. That the cold days don’t seem as cold as last year. That I kind of like the way the house looks most of the time. That Sofie is growing and changing in all sorts of lovely ways. That I don’t mind not going out three nights a week.
But I miss the company of friends, I miss gay men (I don’t have any gay male friends here at all!) And nary a black tie event to even consider. This year, for the first time in 20 years (since 1986) I will be watching the Oscars in my bedroom slippers and not in black satin. Yep, I am unable to go to the Academy of Friends this year. So it will be a novelty, to watch from home. I might have to bring in some gourmet food and wine, so the withdrawal is not so painful!!! And perhaps I will wear my pj’s but with heels.
I miss that feeling that there are all sorts of possibilities out there, even if I am not attending them. I am totally happy with Netflix and the occasional movie in a theater. I have started reading again, which I love and missed. But sometimes…..
And I miss that feeling of familiar. The feeling you have after 20 years in the same place. The weather. The bay area-ness of it all.
But then I think about “retirement”. Whatever and whenever that might happen. And I think that I won’t be able to live in the bay area then, not with a small retirement income and no house. So what would make more sense? I really love Asheville. (Western NC). My good friends Jacque and Barbara are there, living a lovely life (no kids) and always welcoming. It is a place with beauty, cultural arts, some but not tons of snow in the winter and not so many hot sticky nights in summer. Not a bad option, eh? So that is a new train of thought. If I moved “back” to CA for now, rented and perhaps bought a house for my future in NC, in Asheville.
The thought of not having my own house, after nearly a decade of owning one, is hard to handle. I know what a fortunate person I was to have done that in the bay area, and I mourn my lovely home in Oakland. But it is more than that. Renting doesn’t seem settled, somehow. And so far, the only places to rent I have investigated are from $1750 to $2100 for not so much space, less than 1200 square feet. So it is hard to let this less expensive option here go.
Everyone who has written and been so incredibly supportive, I thank you. Don’t stop! And if I start driving you nuts with my indecision or my process, let me know, gently and I will try to stop.
And, if I have not mentioned it, you are all welcome to visit. One or two at a time, of course.
OK, must stop for now and go check her temperature again. She was down to 99.8 before she fell asleep, but that was the Ibuprofen, I suspect.
Love and happy Valentine’s day.
Return of the Update/Blog (Originally written 1/14/2006)
At the request of several of you and because it is a new year and I resolved to try to write more again, I am planning to re-establish the Updates (formerly known as the Ukraine Updates, then the Sofia Updates). I have not named the new blog yet, but if you want to catch up on the previous postings (from about June 2004 through May 2005), you can go to kentlamkin.blogspot.com. I have to come up with a better name for it as well. If you did not receive them before but are getting this, it is because I thought you might enjoy them.
I will, however, let you know the new blog address in a week or so, so you can check that if the spirit moves you****
I will likely be setting up a completely new address for this. As most of you know, the past year (past ten months, really) have had many changes. I stopped writing the blog entries in March, just as things at the “Kent-Lamkin” household began to unravel.
I moved to Durham with Sofie in June of 2004, using the motto “Leap and the net will appear” as a mantra. I had huge hopes and dreams for bringing us together as a family. We got a new house, painted the walls in gorgeous rich colors, re-did the kitchen, got Sofie in a great preschool, and I went on the longest job search of my lifetime. Less than a year after moving to the Triangle, it was very clear that although I was adjusting to the ‘burbs as I call them (all of Durham feels like a big suburb to me, I actually live less than ten minutes from downtown, such as it is), and even learning how to manage the bugs, the heat and the oppressive humidity, the relationship was never going to be what I had hoped. Two very, very different people. We tried, I guess. Years from now, no doubt, I will have more perspective. Right now, I still have many regrets and sadness about the whole thing.
And so the decision was made officially to split up for good sometime in April. Those of you who traveled this path with me in the 2002 split know that one was done with much drama, and that one was exactly the same time that I got the referral for Sofia’s adoption. I made the decision in 2002 to move ahead and go Ukraine to get my daughter. I had waited the 18 months all the paperwork took, not to mention I have never regretted that, even on the most sleepless nights/weeks. My family, friends and community rallied around and I felt supported by the village. The net did appear then, and I landed, albeit not very gracefully, in the net on more than one occasion.
This time, I find myself in a different place. I have a house, a job, a daughter (now nearly 5 and a half years old, where did the time go?) in kindergarten and not a whole lot of friends, family or community around me to bolster my spirits, support me on the bad days and generally be there. I have, as many of you know, turned to lots of you out there in CA for support. And I have been nourished by you.
So now, I am in a place of consideration. Do I want to stay or leave? If I go, where exactly am I going to? Back to California does not mean back to the life or the home I had there once. So much has changed. To all of you who said “don’t sell your house” (which I did, anyway), I want to say “you were so right”. But I am trying to figure out if I can go back to my community and pick up my life there, knowing it will be a different path. Maybe I won’t be able to get a house again, which is a harsh reality. I know the Bay area is a very expensive place to live, so that is a consideration too. But CA is calling me, it still feels like home. And Sofie (post our holiday vacation), cried the other day about how she missed her friends. And that CA is better because the zoo there (Oakland Zoo) has more rides.
A great part of the reason for the move was Sofie’s wellbeing. It is not easy being a single parent as many of you can attest, and it was made more challenging there due to heavy workload and a daughter with some special needs. I thought she would benefit from having two adults and she has. We are different people, Jamie and I and we parent differently, but Sofie being Sofie, has figured all that out. The move to the Triangle in that regard has been a blessing. Sofie has blossomed here, she has gotten lots of services (occupational therapy for one) that have helped her come into her own. She is still the lively child she was, but her behaviors have matured. She is an active kindergartener now, in a great Montessori public (yes, public) school, one block from our house. The IEP team from the Durham Public Schools is awesome and are very focused on helping her achieve. She is learning phonics and also sight reading and gets so delighted when she sees a word that is one of her sight words. The kindergarten list is about 20 short words, like the, and, see, to, etc. I have added Costco, Target and Sears to that list. We read together everyday, and I am taking such pleasure in her learning. She also seems to really like math (the Montessori math methods might have even gotten me to like it), and is so proud of herself when she achieves something in math. She did the hundreds board the other day, and could not wait to tell me. I fake the enthusiasm for the math stuff a bit, but I am secretly excited that she shows aptitude here. She is also more able to express herself, verbally and emotionally. And she has a great memory. She will remember a “promise” I made to her in passing three weeks ago and remind me of it at the most inopportune moments!
I have attached some recent photos, the other girl in the one of two kids is Naomi from San Leandro CA. The girls had a nice play date in CA and they have been having these play dates since Sofie was 21 months old and Naomi was a year old. The grew up together, in many ways. As did their moms. We take photos of them together annually, we have for three years and we hope to continue until they are in college. Or tell us to get lost. Which will probably be a lot sooner than college.
So, do let me know if you want to keep getting these little updates. I send my best to all of you for the new year. And if you should happen to call us here in NC, Sofie might just answer the phone with “Hello, this is Sofie, who is this please?” or the alternative “what do you want?”. We are working on it.
“Leap, and the net will appear”
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