Friday, August 31, 2007

Having A Stacy and Clinton Moment

For those of you who don't know, Stacy and Clinton are the hosts of "What Not To Wear", a program my sister is addicted to and that I watch every so often, sometimes when I am feeling down about myself and my appearance, because the folks they feature often have much worse wardrobes and fashion "non-sense" than I do.

This week, I watched the program one time, when I was having trouble falling asleep. The rest of the week, I have been plagued by mirror moments, when I realize how far astray I have gotten in this world of fashion. I don't, I cannot, wear high heeled shoes anymore. I go for comfort over fashion most of the time. My hair is "chemo permed" and often looks a bit wild and unruly. It surprises me every morning about how it will look. It is in charge, I am not. It has been in the 90's until just a few days ago, and trying to dress in clothing for work in this heat is a feat unto itself. So this week, I often wore what has become my summer in NC uniform, of sorts: a skirt (patterned, floral even), a lightweight shell and a matching sweater sometimes (the library's temperature is often set on cryogenically preserve, and it is cold in here). I should simply stop looking in the mirror, I guess. Every time I peeked, intentionally or not, I was sort of horrified. The "girls" as S & C refer to them, were hardly perky. My belly won't change, it is just a soft mass of lumps these days, and I am trying hard to remember good posture, so it doesn't look any worse.

I do have a nice pedicure, that helps, but overall, summer is not being kind to me, in terms of how I look. Or something. I reminded myself that nobody was filming me (which they do on this show, secret cameras record all your fashion faux pas for two weeks, and then they force you to watch yourself).

Sigh, it all seems so trite, doesn't it? I have more important things to worry about, cancer and parenting and working and trying to stay alive. But a part of me, deep down, knows I am supposed to care at least a bit more. Maybe that is why I loved The Devil Wears Prada. That wonderful scene when Andi sort of snickers at the issue between the two belts and is given an acerbic lecture about who makes the fashion decisions for whom and why it is central to their universe (the fashionistas). But after all those years working around the impeccable folks from Macy's with Passport, some of it kind of got under my skin I guess.

I will likely let go of this in a day or three and go back to my central theme of clean, comfortable and able to move around! But just today, I am having my moment. I want to turn myself over to experts who can fix this all. But would it be sustainable?

Answered Prayers

This week has flown by and it has been another one of those weeks that shows me that life is just one big roller coaster ride these days.

For the past few weeks, the pain in the cancer "area", also referred to by me as "the brick" (that solid, hard place around my liver) has been painful. It used to be just when I sneezed or laughed hard, or something, but for a few weeks, about three or four, maybe, I have been living with pretty much constant distress. I talked to my health care team, and they suggested taking a stronger pain med, which for me is usually Vicodin. I don't like being doped up and so I mostly resisted, trying to breathe through it at home, at work, all the time. And I noticed that while I was able to sort of become acclimated to the constancy of it, it distracted me from work, and meant I was happier when resting than in play. Not so good for daily life!

Monday of this week it was truly terrible.... Jamie was over, I begged off for a while to lie down, that seems to help a bit. And while I was in that prone position, I sort of pleaded with (I am not quite sure who. God? Higher power? My secret Santa?) to make it stop. Pain really gets in the way of living fully. Combined with fatigue it was just bringing me down.

On Tuesday, I headed off for chemo again in the morning, something that honestly feels quite routine these days. It was one of those mornings where the chemo area was running over an hour behind, so that meant just hanging out, waiting. The treatment itself went quickly, about 1.5 hours in and out, if that. And then I was a free, if sleepy, woman. I had planned to go home, nap for a few hours, then resume the little bit of what was left of my day.

It was after I woke up from the nap that I realized it. The pain was just gone. I think it had been in the morning too, but I was too much on the "auto pilot" of my morning routine with getting Sofie up, dressed in something that doesn't make me shudder,packing her lunch, eating breakfast, and getting to "before school" care so I could be at chemo by 8:30. So maybe I didn't notice. I thought perhaps the pre-meds they gave me for chemo might be doping me still, but later in the evening, I still was pain free!

And this has continued all week. There is a slight amount of discomfort, but not the relentless pain. I am so grateful. I have so much respect for people who live with chronic pain. I don't consider myself a total wuss, but pain just messes with my day. And I want to continue to make each day count, every single one.

Today, Friday, I am writing this with a cup of hot Peet's coffee (I continue to mail order this as I have for the past three years!). I am not nauseous. I don't hurt. I plan to go to work for a nearly full day and have dinner with a friend this evening. Normal. Kind of.

It is still hot and muggy here, I am wishing (praying?) for rain. The deep soaking kind that will rescue my plants and trees who look so thirsty.

I know people have been keeping me in their prayers for the past year. It is so wonderful when I have the sense that the prayer is actually working. is the best way I know to face each day.

Sunday, August 26, 2007

Spending Alone Time with Myself

This weekend, Jamie had Sofie (Sofie was thrilled, she has been asking and asking for more time at Jamie's). I had time all to myself to do with as I wished. Well, not exactly, I have not yet done taxes for 2006, and I had promised my tax preparer Jean that I would absolutely have everything to her by September 10th. So that was part of the big picture plan. The other was also paper connected: organizing my receipts so I can submit my health care and Sofie's "dependent care" expenses so I can get reimbursed with my money that is taken out each month.

In my previous life (whenever that was), I used to be uber-organized. I had a basket for pretty much everything, it all had a place, etc. In the past year or two, I have just lived in a sea of the first step was "de-trashing" my office, which I started a few weeks ago. My desk was sorted out, into 2006 and 2007 (figured I would get a jump on the current year too). I had tons of "EOB's" to sort through, arrange in chronological order and add up. And tons of receipts to sort, categorize, etc.

And today, Sunday, I am proud to say I got it done. I was in a bunch of belly pain this weekend, so I would not have been much fun. I slept a lot too, took a nap yesterday, slept early last night,
and then plunged in again this am. And I now have what I need to send to Jean to do taxes, albeit by the October 15th extreme extension deadline, but done!

There is a zen like quality to being alone, I think. I don't always fill my head with all sorts of things, like I do in a busy day. Sometimes, I just focus on the task at hand, slowly, methodically, and there is something so amazing when it is completed, a sense of not just accomplishment, but relief.

Beth called on Saturday (twice, actually) to check in. And as much as I wanted to see her and spend some time, I also wanted to keep plodding away, until I had made more of a dent. So I declined. And I ended up feeling tired by about 7 and getting into bed shortly after. I talked to a few folks on the phone during the day, but otherwise, I was alone.

Bit by bit, I am sorting through a ton of paperwork that has surrounded me in this office and in my life for a lot of years. And gently this time, I am being able to shed it, to let go, of most of the papers. The tokens of my work, the tokens of who I have been for so many years. It is positive and it is freeing in a lot of ways. And the office is beginning to be an actual room, not a dumping ground!

Tomorrow I am going to the lab, then off to work. I am planning to do work at least most of the upcoming week, but not full days, so that I can pick Sofie up and spend time with her without being exhausted. Tuesday is chemo, so that day is shot anyway.

She had a great weekend with Jamie, (see Jamie's blog) and came back here to play about mid afternoon.

Tomorrow is the first day of school and I have to go upstairs to get her on the track to getting ready for bed. She is not all that thrilled with going back to school, although she is excited to see friends and loves her teachers.

I just wanted to comment on the wonder, the awe, of being solo sometimes. Not lonely, just alone. I know you are all out there. And that gives me solace a lot of the time.

Thursday, August 23, 2007

15 Hours Later

So, last night the mood was pragmatism and all reality and probably sounded sad and discouraging. I have received a bunch of emails from friends and family who all sounded sad. And I was, for certain. But then another day dawned.

And I got up and went to work, attending a lively meeting of the Library Management Council, (LMC) with interesting updates. And when I am at work, I feel renewed a bit, and want to be there. I want to contribute more, but overall, I want to keep working a while more, until I figure out how to leave at least a little mark that I was ever here.

I had a good and honest meeting (weekly type) with my boss later this same day. I am a fortunate person and we kept working at what *can* I do. And she came up with capacity building (for the Library) in terms of re-building the Board, keeping on with established relationships and trying to get us to the next level. Those words, capacity building, lit a little spark in me. It is what I used to do in my consultant role for other organizations, it is what I was good at, and perhaps it is what I can do here to help me move forward, help the Library in a positive way and leave a little Debra legacy.

It is important to me that I do that, leave a little of myself here. I have come to really like this place, it has been so good to me and when I come here and do some work, I feel more alive than the previous blog would have you believe.

So this is just a little update for right this moment, to let ya'll know that I am still OK. Hang in with me, folks, it is going to be a bumpy ride, I am sure, but there is still plenty of ride left!

Wednesday, August 22, 2007

A More Somber Update - And Reader Advisement

First of all, the reader advisement: when I write these honest blogs about what is going on, it still doesn't mean I am on my deathbed. I don't have that "cancer patient look, all sucked in cheeks, ashen color or skin and bones. Not hardly. I don't even look sick these days, or so most people tell me. My color is good, I have hardly lost much weight, I am not walking around with that queasy look and except for my energy waning so much more quickly over the day, I look kind of "normal". Whatever that is for me. Oh, and my hair continues with its "chemo perm" all curly and wild. Especially assisted by the humidity that continues to plague my state.

But the news here is not so great. I went in to clinic on Tuesday this week and my numbers, the CA-125, had climbed - a lot. Into the high 300's again, and it was under 100 in mid-June. Not good news. The Gemzar evidently had been working, but just stopped. I have done one cycle of this new drug (Topotecan), which is three consecutive treatments, then one week off. Tuesday I started cycle 2, and I hope with another cycle the numbers start going down again. This time, they added Avastin (made right there in the Bay at Genentech). This is given and clinically tried with lung and colon cancer, is not yet even on the website for Ovarian but evidently has shown some success in earlier stage trials. So I am going to try this too, hoping it will "boost" the effects of the Topotecan.

If you Google any of these drugs you will see in clear print, what is up with them. Especially the Avastin site, where it is described as shown to "prolong life". Not cure, not put into remission, just add time. If you read more, you will see that there are some scary side effects, too, like bowel perforation. I will very mindful of any changes and zip myself to the ER at any sign of pain in the gut!

That is the tough and scary part of what is going on now. The drugs don't seem to be working, the tumor is growing (I can feel it being larger) and it hurts. Not worst pain in the world hurt, but it makes its presence known on a pretty much daily basis, reminding me that it is there.

And so I am facing some tough and challenging choices. I asked my doctor the other day, what would he say about the idea of being on medical disability and he said "if I were you, I would be on it already". He knows my situation of being a parent of a young child (he has met Sofie) and he said, if it were just me and work, and that were it, then maybe I could push through, but being a parent is my number one concern. That, and having enough resources to take care of her while I am alive. I could get short term disability from work, but that is fifty percent of my salary, so I would have to supplement (from my not to be needed retirement fund, not huge, but OK for short term) and then Cobra my insurance, which is expensive. That would last for a year, then unfortunately, the State doesn't qualify me for long term disability until I have five years of "service" and I would be short by 1.5 years. And probably in no shape to come back to work anyway.

So, I struggle with all this. I don't want to spend time at work, I have trouble focusing when I am there, there is so much else on my mine. But work has been so wonderful to me, and I feel so badly that after all this support, since January of this year, nearly 8 months, I would just leave them. So I can stretch the share leave out more, and work 16-20 hours a week, at most. Until I just can't. I wish the long term disability picture were better, if I had read the fine print when I took the job (but who does on that sort of thing) I would have bought private long term disability for the first five years, as extra coverage. At least I have a good life insurance plan for Sofie. But I will lose all the work life insurance after I leave. It all makes no sense, is hard to figure out and I am trying hard to listen to my heart and not just the voices in my pragmatic head, which are all about being responsible, with a bit of Jewish guilt thrown in for good measure.

I am tired all the time and really afraid that working even sixteen to twenty hours a week, will compromise my ability to parent Sofie as well as I want to. Jamie is pitching in a lot of evenings so I can take it slower, but I miss doing things myself and I know tiredness can make me shorter tempered or cranky, and I don’t want that. I wanna be the fun mom too. But Sofie has already informed me I am not much fun anymore and is also asking to spend more time with Jamie. I know she is taking care of herself, she knows a lot about what is going on, whether she opens up to me and talks about it or not. But it hurts. Tonight when I read to her and then we did our little song, I just stroked her shoulders and hair, I love that child so much it hurts. I cannot imagine sometimes that I won't get to see her grow up, as challenging as I know her pre-teen and teen years will be. But she is so little, I have had only five years with her and it isn't fair. I waited all my life (or so it seems) to be a mom and now, I worry that I will leave her and break her heart. And then I worry that she will forget me. I know she loves Jamie and that although I know it won't be easy, they will be OK, but I want to be in on all this growing up stuff.

I have to stop now, I am getting teary. I continue to be hopeful that this new drug combo will buy me more time, maybe even put me into some sort of slowdown on the growth of this cancer. I hope so.

Saturday, August 18, 2007


A lazy, slow Saturday morning. A rare occurrence, really, in my life. Sofie is still at camp until tomorrow. My friend Barbara is on her way to visit me, but won't be here for a couple of hours. So I slept late (nearly 8 AM, trust me, late by my standards). And now, with a cup of coffee nearby, I have been just doing a bit of stuff on the computer, and thinking about all the things I have to do here at home, in this last day of "freedom".

It has been interesting, I miss Sofie, but not in a terrible way, and I have loved having unlimited time to myself. I have craved it actually. Unfortunately, a lot of the time has been used for sleep, but even with that, I have enjoyed having time to putter in my house, not really have a directed purpose, other than the constant attempts to try to be more organized. But it has been mellow and good.

I have been going through "stuff" of all kinds, the other day it was a box of jewelry I haven't worn in years. Why is it that something seems to be so very appealing in the buying process and years later is all but forgotten or somehow just not right anymore? So I have decided to re-purpose some of my stuff to other people before I am not around to make those choices. I started with a pair of earrings I got some time in the mid-1980's I think....beautiful dangling earrings in purple with gold moons and stars. I loved them so much I spent much more than I should have at the time. They are still lovely but somehow just not me anymore. But they had a work colleague's name written all over them. So, not knowing if she would find it weird or not, I gave them to her yesterday. She loved them, they look totally perfect on her and I was so happy to have found them a good home.

This is something I think I need to do more of, passing things along or simply shedding them. Not only for the physical clutter they can cause, but also because I am understanding more deeply than I have ever before, my stuff is not who I am. Not the papers I have have saved of my work product, not the clothing I barely wear anymore, not any of that. My stuff is just stuff.

I got rid of a lot of stuff, or so I thought, when I moved to NC. But somehow, what I brought and what I have acquired still spills over and overwhelms me. So more de-cluttering is in order.

Barbara has said she will help me today, and working with a friend might make some of this easier to do. Sometimes I get a little mushy and find it hard to let go. Cards, little notes, things like that.

It doesn't mean I have gone all non materialistic, but these days, the treasures I care most about are the human ones.

Thursday, August 16, 2007

Life, Revealed

Today I am home, having done all of two days at work. I get so exhausted there, and no matter how much I sleep (and I have been getting in excess of seven hours a night), I am tired and I hurt. So today was a planned day off, tomorrow there is a big retirement party at the Library for one of my most favorite colleagues, and I want to be able to participate.

So today, I took on a project: trying to dig out my home office, which has been a mess pretty much since I moved into it in June 2004. I moved boxes of "stuff", work product from my consulting days, samples of things I have written, letters, etc. Not to mention several boxes of memorabilia, a nice name for the stuff of our past lives. Today, I was determined to fill up some of those huge black sturdy bags, the kind people use when they mean business.

Some of it has been pretty easy, old brochures, booklets, lots of materials I picked up here and there, on HIV and other topics, that have been kind of dormant in my life here. And most of the information is online, with better and more current statistics, should I need them.

Then I unearthed a box of personal stuff: a journal, half filled, from 1987-1988, so those of you who remember me then can only imagine the contents of this journal! It was an interesting read, I tended to write only when in angst mode, so it is full of self-questioning, painful feelings of love not quite returned, etc. You know, the usual.

Then I found them: letters from the various women I was dating in that time period. Or whatever you would call what we were doing. These were fun to read and then, without a minute of regret, tear up and shove into the large plastic bags. I did find some from a young woman I had simply forgotten I had corresponded with. She poured our her heart, sending me poetry, long letters (remember, this was before email and blogs). I am assuming I wrote similar ones to her. I can only hope she has lost or destroyed them. But they were a little diversion in this project and then, like pretty much all the years of thank you and birthday cards I had saved, I purged them too.

That part of my life seems so long ago. OK, it was that long ago, about 20 years and I was a 30-something woman with no child to care for. And evidently a lot of time on my hands for fun stuff. It was nice to read the letters, remember that time in my life and move on.

This project will hardly be done today, but I did make a significant dent in it. The ultimate goal was to organize materials for taxes for both last year (yes, I have an extension) and for 2007. With all the medical bills I have, I need to be better organized to submit information for taxes. Doing it this way is too hard. So I am attempting to rectify a bad situation and make it better for the future as well.

I do have to leave the house at some point to go to Costco before the masses do. I have a couple of things, including something for work tomorrow, to pick up. So in a few hours I will get out of here for a bit and get there.

Cannot believe tomorrow is Friday, this week has simply slipped away.

Wednesday, August 15, 2007


My life. I am so tired of being tired. I know that is not an original thought, but it suits my mood.

I went to work yesterday but was uncomfortable most of the day and exhausted before 2 PM. Jamie and I went out for a child free dinner, which should have been more fun, but I was so tired that I didn't even have much appetite for the (delicious) pasta dish I had ordered. And those of you who know me know that my appetite generally stays intact.

We were home a little after 8 PM, and all I could do was go to bed. I have things all over the house screaming at me "organize", "clean me" etc. But I can't. I am just weary. I tried again to read a bit more of this weekend's NY Times, but I didn't last long. Mostly I just need to sleep.

I hate this. I feel like a prisoner in my body. I have a list of "projects" none of which are all that impressive, but I have to work on them, my house feels cluttered and there is stuff that needs to be dealt with. But it is all I can do in the afternoon/evenings to read or watch something I actually like. Then crash again.

I hope the medications (Procrit) they are giving me will help, I really need them to. I cannot imagine living like this for sustained periods of time. Sofie told me I was no fun anymore and I am beginning to agree with her.

Speaking of Sofie, click on the LINK to Jamie's blog (left side of my page) to see cute photo of Sofie and her counselor.

Tuesday, August 14, 2007

Big Girl Stuff

Yesterday morning, we drove Sofie to Camp Kesem, about 1.5 hours from here, for her first ever week of sleep away camp. Camp Kesem is a special camp for kids who have a parent (or in her case, parents) with cancer. It is run by folks from Duke and UNC and is free to families. The purpose is to give families a break and to provide a supportive place for the kids.

We prepped Sofie for this for weeks, discussing it and talking about ways she could cope if she was a little sad or missed us. I think it might have worked. I welled up with tears as we pulled into the parking lot. She was fine, excited. She had an arsenal of supportive objects packed up: Licky, the favored pink snake of the trio, three cats (stuffed) and of course, Yang Yang, her blankie. I talked in advance with the counselors at Camp, they assured me that most kids brought at least one safety object (like the blanket) and that she would not be teased, which was her big fear. It is interesting to watch Sofie become aware of the outside world and the possibility of being teased for sucking her thumb or having her blanket. We assured her she would not be alone!

The ratio at her age group (6-8) was one counselor to three kids, which sounded perfect for a first time camper. We met "Bean" her counselor who looked about twelve to me, but I am sure was a bit older. And then, after her things were taken to her cabin by the staff, she simply kissed us goodbye and left happily with Bean. That was it. So we did good preparation (assisted a lot by her wonderful therapist Jane) or Sofie truly is the independent little soul I think she is. She was able to articulate that AM that sometimes in new situations she feels shy and we talked about that, but essentially, her little social skills are such that she is OK in new situations, after a bit of adjustment time. I raised her that way, I guess. And I am proud of her, I really am. She just turned seven and she really does have a good sense of who she is.

So I now have a week sans child! What to do, what to do. I am so behind on so many things due to exhaustion (I simply poop out by 9 PM and that leaves little or no time to do anything much, not that I had tons of time on my hands prior to having chemo either!). I have to pull things together for taxes, as the extension is "only" until October. Mostly this means going through tons of medical receipts to see how much out of pocket I really did do. I started this process and was quite staggered by it! Prescriptions alone really add up, some have co-pays of $25 or $50 for the really big drugs, like the Lovenox. So in a month, several hundred dollars of co-pays are just out the door.

I want to mention how grateful I am for the Friends of Debra fund. It is (still) hard for me to need or to ask for help, but I am so glad that fund is there. Not just for the medical stuff, but all the times we do take out because Mommy is too tired to think about dinner! Sofie is getting kind of spoiled on the restaurant food thing, and I know in the fall we will go back to more meals at home after school, more normal, but this summer has been a bit out of the usual. Especially now, when I am so tired all the time.

Sofie told me last week that I wasn't much of a fun Mom anymore, "You never do any fun things anymore", to be precise. We talked a bit out how the treatments make me so tired. "I wish you did not have to have those treatments" she said. Me too. I would love to be more peppy and be able to keep up with my seven year old! But I can barely keep up with me.

Jamie has been here a lot, as back up and sometimes I simply have to crash and sleep. Yesterday after dropping Sofie off, I went to the lab for the weekly blood letting and then came home, crawled into bed and crashed for three hours. I woke to eat a bowl of cereal for dinner (something that I just don't do when I am being the parent), and then kind of just hung out for a few more hours before dropping off to sleep again. I awoke this AM, not quite rested, but determined to try to make a "normal" day of it and go to work. So off to the showers with me.

Thursday, August 09, 2007

Night Musings

I am doing much better this week, really. Darkness lifting, spirit coming back, although still tired. But what the heck am I doing up this late? We went for pizza dinner, it is too hot to even think about cooking, at least 104 here today. Honestly if I weren’t a parent, I would have eaten a peach and called it a night. But Sofie was starving, as she had camp, then her last summer tutoring session and so we joined Jamie at the Mellow Mushroom (which was hardly mellow) and had a great pizza dinner. Then headed home where she had a long bath, including a little play, then the dramatic blow drying of her hair, and one Magic School bus book, then we turn off the lights and we sing our special night song “have beautiful, colorful dreams”. We made that up a few years ago, but we sing it to each other most every night, a sweet tradition. She was asleep in a moment.

Then I had a bunch of paperwork to do, for her doctor visit tomorrow, that of course I had procrastinated until the day before and then I had to “check” email and here I am, 1.5 hours later, still on it.

Mario was just here for a brief visit, in this crazy heat. We ate out, pretty much all the time. But how else to introduce him to happening Durham? Or maybe not so happening, but I did take him to Mama Dips for breakfast the day before he left and to my very favorite cafe, Mad Hatter, today before going to the airport. Mario mentioned that he had gotten a sense from that "dark" blog of a few entries ago that this might be his last visit. Puleeeeeze. I am hardly wasting away. Before I go all Tammy Faye on you all, believe me, if there is a significant weight loss from this cancer, there will be blog or two about it. With photos. I have been trying to lose weight my whole life, if it happens, believe me, I will share! Right now, the steroids and my still fine appetite have me not losing much of anything.

But when I do write about those scary places, or the fears I have, it is not to worry all of you, just to check in with where I am that moment. It usually passes after a while. Life has a way of making you stay present or at least that happens to me. If I go to work, I engage more. If I spend time with Sofie in her little world, how can I not be there for her? Even when I am tired and sometimes grouchy. She and I have been talking more about the treatments, how they make me feel or act. She doesn't like it when I am tired and become short with her and I am not loving this period of her being so obstinate about virtually everything. We are discussing it and trying to find other ways to be with each other. And I find myself saying things like "Because I am the mom, that's why". These things just fly out of my mouth sometimes.

At dinner we had a pretty funny discussion of the fact that I say idiot and stupid about other drivers and Sofie totally busted me on that. Those are two words that are on the "bad" list and we are not supposed to use them. Except I have given her (and me) permission to use idiot when talking about the President. What other word works as well, I ask you? I sometimes explain him by saying that well, he maybe isn't a terrible person, he just makes bad choices. But idiot really does it justice, I think. So my second grader will probably use that in school. I dread to think what they talk about at their little lunch room tables sometimes. I know that is where she learned to make farting noises with her arms, which she thinks are hilarious. I am less amused, but her intensity about doing it is funny.

Digression of Note: I haven't blogged about her seventh birthday, but Jamie did on her blog, you can access that by clicking on the left side of my blog to get to hers. Cute photo of the kid awaits. The whole birthday celebration madness was fun but always makes me wonder, what the heck will we do next year?

But we get through it all, somehow.

I had thought about a before school happens visit to the Bay Area, but with the new treatment schedule that would not have given me even a week, and that is too brief for two people to fly across country. And so, the week after next, I will be a stay at home mom on scorching August days, coming up with creative ways to entertain my kid. I don't have it in me to do that full time, I don't think. But we will have fun, heat or not. Pool, Museum of Life and Science, Mini golf, there is stuff to do.

Sofie is such a pistol. Mouthy, pushing her independence, always trying to get things her way. She says things like “Debra, you don’t understand what I was doing, you never understand me”. I expected this, but not for another oh, six years. She is only seven!!! But wants to be her own girl. A good thing, I suppose, but she is a tough one. We are talking about it. Above all else, I want her to know how much she is loved. Always and forever.

And now, very late, to bed. Good night.

Wednesday, August 08, 2007

Caution: Human Moving Slowly

Since Monday it has been oppressively hot, getting hotter each day and more humid. Mario is having a short visit and was in Savannah GA before this, so he was not completely taken aback by our lovely weather (at this point, Sofie would point out I was being sarcastic, in case that was not obvious). So we Triangle folks are moving slow these days, which suits me fine. I can use the perfect combo for my excuse: the heat combined with the cancer treatment fatigue. Who would expect me to be bouncing around anyway?

It is so humid today that getting out of the air conditioned car, my glasses fogged up. Yesterday we beat the heat by being like good suburbanites: we went to a movie and the mall. I had held off seeing Hairspray until his arrival, it seemed to be a movie that wanted a gay boyfriend. So after chemo yesterday, we took off for the mall. And we had a great time, the movie was delightful and upbeat, something I need in a movie these days, and then we had a late lunch at an uncrowded Cheesecake Factory. I never go there because usually it is packed and the wait is over 40 minutes. But it was lovely in mid-afternoon. We had a hearty "lunch" and figured it might just take us through the evening too.

Even shopping was exhausting in this weather, just looking. We left to pick up Sofie from camp and got a phone call for a spontaneous birthday ice cream celebration in 45 minutes. What the heck, when it is 99 degrees, ice cream for dinner, even with a kid, sounds pretty darn good. So off we went to the ice cream place (the kind that mixes stuff into the ice cream for even more richness) and celebrated with Sharon. Sofie ate a real dinner at about 8:30 PM.

We all talked about the weather, the need to move slowly (this is a Southern thang for a reason). And we talked about me.

During lunch, Mario and I talked a lot, about folks "back there" in CA and about my recent news on the blog before this one. I guess people in CA who haven't seen me have a more vivid idea in their heads that I am sick and dying and look like it. The truth is about as opposite as you can get. This new drug is better nausea-wise, I feel fine pretty much, the steroids keep the appetite up, more than I wish, and I look "normal". And really, except for extreme fatigue and some neuropathy stuff in my feet, I feel pretty much OK. The overwhelming sadness of a few weeks ago is being talked through in therapy and the companionship with visitors makes it better too.
I did not want people to think I was going all Tammy Faye on them right now...believe me, if I have a significant weight loss, that will make it to the blog. After a lifetime of trying to lose weight, that would not be something I would keep private, I promise you.

My struggles right now, besides the fatigue, are trying to figure out the unfigurable: how long do I have and what the heck do I want to do with that time? There is the issue of working vs. not working, I am not quite ready to go on disability, but on the other hand, it is hard to engage at work. I feel like I am constantly starting over, and that is not good. Others have been more reassuring, saying that I need to look at what I have accomplished and that previous directors of development did not do what I have done. Which means they must have sat on their butts and done nothing, because I don't feel that successful, not by a long shot. I feel mostly like I am coasting and strategizing, but not implementing. And that is what I have to focus on if I am to continue to think of myself as actually working.

So that is the issue, right now. much, when I think it would be great to be more home centered with Sofie, come fall. So perhaps I will work it out so I use my better times (mornings and early afternoons) and then get her earlier than previously. That might be a solution for now. I want to spend time with her when we are both not tired and cranky.

I imagine I will get used to the fatigue levels somewhat, it is amazing what you can incorporate when it is simply not in your world to change it. And the drug they are giving me, Procrit, should kick in a bit soon, I hope, to raise those red counts. Now we just have to be super-careful about the white counts. Are you bored by all of this yet? I am but it is a regular part of my everyday life, so there you have it.

Sofie is finishing up with day camps this week and next Monday, we take her for a week at Camp Kesem. A sleep away camp, specially designed for kids who have a parent (or in her sorry case, parents) with cancer. I hope she won't be homesick, not too much, anyway, and that this experience will be good for her, helping her to open up. I want her to talk to me about her scary feelings if she has them. So far, I think she is protecting me and only talks about how I never have fun with her anymore, not ever! This is more her little stubborn seven year old self talking. The other day, the drama escalated to "you are ruining my whole life, Debra!" because I told her she had to go to tutoring even if it was hot outside.

But seven she is, the birthday splash party was fun, for the kids at least, and she was happily gifted with great presents. So all good. It is wonderful to see that she is developing these friendships with kids from both school and camp and that I can take a little peek at how that might evolve over time. I like it best when the kid has a cool parent, but sometimes, it is just about the children. And the parents, like one new couple we met via their daughter, might be as far away from someone who would be in my life as possible, but it kind of passes by that part, at least sometimes.

OK, time for a shower, and we are headed out for brunch and a rousing scrabble game. And then we will have a leisurely day. The only kind you should have when it is this darn hot!!!