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.

Caution: Human Moving Slowly

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

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

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

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

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

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

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

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

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

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

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

My Surreal Life: A True Reality Show

It was an awesome weekend. Following a central development retreat on Thursday and Friday in Pinehurst (or near there, there is Pine everything in that part of the state), I drove four hours to Asheville for the weekend and spent the time being taken care of, lovingly, by Barbara and Jacque. We paced ourselves gently on Friday PM, eating an in home dinner with a few friends. Then Saturday we went to Blowing Rock to have spa day at Westglow! Ahhhhh. It did not start out perfectly, I was informed upon our (slightly late due to bad directions) arrival that my therapist had called in so they only had a male available. Would that be a problem? I thought about it for a minute and realized it was. I am just not comfortable having my body massaged, exfoliated, and poked at by a guy. So I took a deep breath and said yes. I wasn't angry, just clear. It was, so how might we work it out? The first treatment was cancelled (body scrub, I could live without that one) and the rest was re-arranged a bit, so after a delicious spa lunch, my two hour hot stone massage (complete with lovely stretching in a nice passive way, assisted by the massage therapist) and my facial with complimentary foot and head rub (ahhhhh) were done by women. I was in heaven, truly lovely to have my otherwise lumpy and toxin ridden body treated so well. There is something about hot stone massage that I just relax into, it is very therapeutic for both physical relaxation as well as mental!

We listened to the soundtrack of Hairspray on our drive home arrived home after 7:30 PM and I was content to be a couch critter, reading my summer read du jour. Sunday was mellow again, and Barbara and I made time to discuss the future planning that she is involved in (she is going to be the person who manages all things financial for me on Sofie's behalf, after). This discussion was necessary and important, but periodically, I kept having these short lapses into surreality. I am planning "as if" I don't have all the time in the world. Because, most likely, I don't. But I still find myself going into some weird moments of denial or disbelief as I imagine not knowing my daughter at 10. Or seeing her through the trials and tribulations of middle school and high school. (ground rules include family time as a priority, dinners together most school nights, no tattoos at all until at least 16, then if she really wants one, if it is tasteful, and not in a highly visible area....and what about driving and a car? And college. I want to be there to proofread her applications. But reality check: I have this cancer, and it is growing and the odds are not all that great. So I have to plan, really clearly and with intention and trust that she will be fine. But it is very hard. And not at all what I had imagined my life with her to be.

Thank you, Barbara and Jacque, for taking care of me this weekend, for the spa stuff, for all of it. Sometimes, I just need that, to be totally in someone else's hands. So I don't have to think about things. Or do much at all. And thank you Jamie, for being with Sofie, so I could.

Today was the second chemo of this first cycle of the fourth drug. Following that? Last week went pretty well, the drugs did their jobs and kept the nausea away and when I pull (gently) on my hair, so far it is staying put. I picked up the medical recertification form that my work needed (it has been about a year since I submitted one). Last time, the certificate had a more short term approach: complete chemotherapy in August, should be able to return to "normal" full time work by mid-October. And I was! I was back to normal. Only it wasn't to be a long view on that.

This time, the diagnosis said it all: Progressive Ovarian Cancer. Time frame unknown for treatment. Time frame unknown for limitations due to treatments, low counts, etc. I have been struggling with labels lately. I was fine last year with cancer survivor, even cancer patient while the treatments were being completed. But now it is harder. Am I employed full time? Yes, technically, but I cannot really be counted on for a full day and frankly, my heart and mind are just not there, even when I try. I am thinking, more often now, of the to do list for my life. Summer is flying by, how is that possible? Have I spent enough time with Sofie this summer? Not really, there is never "enough time" but yes, we have spent some good times together. And she doesn't need me hovering over her. She plays just fine by herself, thank you. And loves camp. It does make her tired, so evenings are kind of mellow for us. The bedtime ritual of singing to each other ("have beautiful, colorful dreams", a song of our own creations) and snuggling or rubbing her tummy are precious. Sometimes that is when the tears come.

But the labels. I am now "living with cancer" on a daily basis. But am I dying from it? I choose mostly to say not now (yes, I know we are all dying every day, but you know what I mean). But do I want to spend six months, a year, working when I could/should be home at 3:10 PM to greet my daughter and help her get through her homework earlier? Isn't that what is more important? I have to make choices, maybe not today, but I am obsessing about them a bit too much these days. No crystal ball exists to mark a date or a timeline so I can work out the details. I am trying hard to be OK with all this, to listen to my heart, not my pragmatic head, but I don't have a lot of answers. If Lifetime (television for woman and gay men) was doing a reality show of my life, they would see me in overwhelm most days lately. Sorting through piles of stuff, papers, etc and trying to organize it for the future. Whatever that is.

New Day, New Chemo

On Tuesday this week, I had the first dose of the new chemotherapy. For those who are counting, this is the fourth drug or drug combination since April of 2006, when the first
"preventative" chemo cocktail of Taxol and Carboplatin was served up for six cycles. Then came Doxil (the one where preventing the weird side effects had me icing my hands and feet with icepacks three times a day and fearing stoves and toasters and hot showers). Fortunately, no side effects manifested. Not so fortunately, the Doxil did absolutely nada. But it did come with a great purple gift bag, which I still use, filled with lots of fun stuff. Then I was on Gemcitabine (Gemzar) and Gemzar with Carbo combination. It seemed to be working, the all important numbers were going down, nicely and the belly pain stopped for a while.

Then, at the last treatment of cycle six (with no real end in sight at that point), my white blood count dropped too low to treat me, so a treatment was skipped, then we were on the cruise. When I came back four weeks had passed, and those numbers had elevated a bit (gone up 8 points) but I was told no worries. Within the zone. To be expected.

At the clinic visit, I told the new fellow that I was feeling the belly pain again, and mentioned that my left hip had been hurting for over three weeks for no apparent reason. As I described in the previous blog, the path led to the CT scan and then to pulling the Gemzar/Carbo drugs and switching me to the newest in the drug arsenal: Topotecan HCL (also called Hycamtin). Topotecan sounds like an exotic tropical parrot or a native American tribe from Upstate NY.

(By the way, the hip CT was negative for cancer, I had an X-ray the other day, no results yet, but the pain seems to be subsiding since I had that fall last week...go figure!!)

So the newdrug (Google it, I did) is one that is given to women when the first and second line ovarian cancer drugs don't seem to work or stop working. It is a quick infusion treatment, lasting only half an hour after the pre-medications are administered. So I can be out of there by noon or before, if I get an early appointment, after camp drop off.

I took this on Tuesday, and other than being really sleepy (from the "relaxing" medications they drip in first) and then taking the anti-nausea drugs and steroids, I am finding myself tonight, feeling fine. Pumped a bit on the steroids, so I am awake at nearly 11 PM, which was not the case previously, but doing OK. Trying to fight the munchies that come with the steroid pop.

I am trying to be optimistic still, and hoping this one will stop or at least slow down the progression of the disease and buy more time. At the same time, I am trying to accelerate some of the things on my "to do list" of getting my affairs in order. It's just me, being pragmatic again, but with a bit more of a motivation. So getting it all together, step by step.

Sofie is getting excited about going to Camp Kesem at the end of her summer vacation. This is a free camp for kids who have a parent (or in her case, parents) with Cancer, run by volunteers from Duke, UNC and other places. It is a week of sleep away camp, her first time away from home for more than an overnight. She is a little anxious about missing us, and mostly worried that she might be teased for bringing Yang Yang, which is what her blankie is called these days. But we are all reassuring her that all the kids there have a Mom or Dad with cancer and they will be bringing their blankies or stuffies too. And the instructions from camp even said this!

I will miss her for that week, but I hope that she will be able to articulate her feelings to people who might share her worries. She and Jamie have talked about whether she thinks I might die (at this point, she says she doesn't). She just knows I get really tired and crabby some times from treatment. But today, the steroids helped me be able to push her on a special swing device at the park for a while. Sometimes I understand what Barry Bonds might have been thinking *if* he actually took performance enhancing drugs. They do make me feel more like superwoman.

So tomorrow, back to work. I have a one and a half day Central Development retreat near Pinehurst NC (where there are all sorts of famous golfing places evidently). After the retreat ends on Friday, I am heading to Asheville to see Barbara and Jacque and on Saturday --- Spa Day! It was to have been a celebration of ending chemo in June, but I am still looking forward to it so much. A whole day to relax and feel pampered.

Chemo this time will be three weeks on and one week off. It makes it seem like it is every week, pretty much. I lose track of the weeks, the months. I cannot believe July is nearly over. It seems like summer just started. My work week starts, stops and starts again, I feel like I am not accomplishing much.

In the months to come, I have to see how I feel and then make some decisions about working. If the treatments continue for a long time (as they have suggested they might), that is going to make working anywhere near full time impossible. I love the Health Sciences Library and my colleagues, but they deserve more. My boss has been tremendous all through this, but my body won't get better, and at some point, I have to decide what to do, what is best for me, for them, for the whole unpredictable situation.

Meanwhile, July brought upon it a new period of meeting my deductible and co-insurance cap before they start to pick up the costs for most of my treatment stuff. So not looking forward to the out of pocket costs, thank goodness for the generosity of so many friends who have contributed to the Friends of Debra fund. It is helping support me for all this extra stuff, including the hundreds of dollars of prescription co-pays, the acupuncture, therapies and yes, the massage which really helps with stress, body pain, etc.

More to come as this path continues. I feel like a Wikipedia entry full of information about ovarian cancer drugs, not to mention my opinions about them. But all of this is worth it if I can buy extra time for a life with my family and friends.

Love to you all.

Under The Weather

It is July, the heart of summer weather here in the southlands.

I just have to write a short comment on the weather and my relationship with it. It has been in the 90's for the past couple of days since we returned, hot, humid, you know the drill. But I find that I am doing much better this summer. I notice the little breezes and today, when it is quite muggy out, I also feel more comfortable, in my little summer skirt, than I have years before. What's up with that, really? Have I put the weather in perspective too? My Subaru is usually over 100 degrees when I get in to it from being at work (it is parked on the deck in an uncovered spot). Even so, I am surviving and thriving this year. I never thought that would be possible.

I dread the possibility of hair loss from the new chemo, but I am pretty sure I won't do much in the way (if anything) on wigs. Too hot in August. So I guess I will get used to bald again if it happens. There is a 50/50 chance (which I think is the drug company being non-committal). Anyway, I looked kind of OK before with short short hair or even bald. It is more how I feel at work. I know my colleagues will be fine, it is donors and that sort of meeting that I feel less comfortable in. I don't want the meeting to be about me and the cancer, when it should be about them and the Library.

I am also under the weather emotionally, these past few days. Since the CT. I feel overwhelmed by all sorts of little things (like laundry, making supper, piles of "stuff" and the like). I finally cried on the way to work this AM, while listening to "Seasons of Love", the song from RENT. I asked Jamie for the CD, since Sofie likes the song and knows some but not all of the words. This is a song that says so much of what I believe to be true, that it is about love. In all its varied expressions.

I need to do more crying, but not right now, I am at work and have three meetings in a row today. So I will defer the tears for a bit.

Funny Cruise Moments

It is going to be hard to summarize all the great moments (and the just wonderful normal moments) on the cruise, but let me provide a few bullet points for your amusement!

Several days into the cruise, Sofie was standing on the big bed, naked, facing the mirrored wall. She had played in the sun, carefully coated with number 50 sunscreen, for a few days now. "Mom" she said excitedly. "Which one?" we asked. "Both of you". "Mom, I have a picture of my bathing suit on my body". Her tan was pretty impressive. And all four of her bathing suits were exactly the same style, different colors, so the imprint was clearly of that style!

Another day, as I was laying out my clothing, I picked up my underwear to put it on. "Mom, those are some pretty big panties" she said. Kids, you gotta love that honesty. She sometimes forgets that the whole world doesn't know all about her. When Sher, a new friend (friend of Ellen LaPointe's who I met on the cruise with her daughter Max), asked Sofie what she wanted her to bring from the buffet for her lunch, Sofie responded "what I like" as if everyone should simply know that. By my count, she ate hot dogs every day for the entire week from the Kids Cafe. And she ate huge piles of bacon and sausages for breakfast.

Personally, my favorite Sofie tale is when we were walking to the kids pool. We saw another mom, looking a bit harried, who was pushing one kid in a stroller and chasing after her five year old son. She kept calling his name and asking him to stop running. He acted like he had not heard her (sound familiar, parents?). She finally yelled at him and did the counting thing: One, two....he stopped. Sofie took it upon herself to go over to the mom and tell her "My mom yells and does that counting thing too, and I don't like it". Great Sofie, out me as a yelling mom to a stranger. The other mom and I exchanged knowing looks.

The cruise food was irregular. The buffet offered countless options, most of which did not really appeal to me. Too many cooked hot food for lunch with sauces.

Dinners, however, were another story, three of the evenings, we had dinner at Aqua, offering a five course menu (the last course was cheese, which we never had any real interest or room for).

We had a great wait staff team and on our last night there, we gave them a big tip for treating us so well. From our very first meal there, when Sofie consumed three portions of beef wellington to the last when she ate two sirloin steaks, the food and the service were wonderful. The other speciality restaurants were more disappointing: the Tepanyaki place (like Benihana) was hard to get a reservation for, we finally did and then our guy seemed to be a trainee, and didn't do the fancy knife throwing around stuff like his partner (who faced the other table). The food was OK, and not too expensive (extra cover charge of $20 pp), but not really all that.

The Italian place was not a cover charge, which was good, since the food was mediocre and the service erratic. The Sushi place was better, Sofie asked for sushi one night and I took her, there was a $15 dollar cover but they did not charge for her. She ate more than I did, as that night we had other plans for dinner.

The shows, as I mentioned before, were great. The last night we saw Andrea McArdle and other r families crew and staff sing Annie. Someone kind of narrated, and the choral version was a 45 minute great show. We were up in the balcony with Laurie and I ended up sitting next to Andrea's husband Ed with wiggly Sofie on my lap. He was great about it and Sofie seemed to like the singing. I thought I had seen the show when I was about 15, but then I did the math, the show opened in the late 70's and I was hardly a teenager. Memories of youth are fading.

Since I said these would be funny moments, I will close with just one great image, that of my daughter swimming in the general pool or hot tubs, in her snorkel mask and tube. I would read and look up every so often to scan the horizon. That snorkel gear helped me locate her every time! Sofie enjoyed the free ice cream cones that were available by the pool on a daily basis, as did we all.

I miss that cruise already. Today I had to get a salmon bagel with capers and onion, tomatoes and cream cheese, like the daily breakfast I had for the whole week.

Oh, and because it was a gay cruise, don't you know that on the costume nights, the boys especially went all out for themselves and their kids.....great and creative costumes from their regions (the winners were the Brooklyn bridge, I think). And we just had cute t shirts. Next time!!!

Cancer Sucks

I just heard back from Teri, who kind of read me the radiology report from last night's CT scan. The "good news" is that it (the cancer) doesn't appear to be in the left hip, so not the cause of the pain I have been having. Meaning it is not in the bones. Which of course, is very good news.

The less good news but the news I kind of suspected for the past month or so is that the tumor is growing on the liver, there appears to be one more (teeny) lesion there and there is more "activity" in the peritoneal cavity.

They are going to likely put me on another (this is the fourth) kind of chemo, one called Topotecan or Hycamtin, if you desire to Google it. It is for those of us in the unique place of having failed original and secondary treatment options. Yep, that is me, someone for whom failure is not a pretty or acceptable word, failing all over the place. It was daunting to read the link. Anyway, it clearly states that the goal of treatment is not remission (or cure, that went out the window a while ago), but rather to slow progression of the disease. Slow it a lot, I hope, I have a seven year plan and this is only year one of that.

The other day, I was trying to recall all five stages of Kubler-Ross stages of death and dying. I got to four and could not conjure up the fifth one (but I Googled that today). It is especially odd for me, as I did my graduate work on that topic! But that was centuries ago. I haven't cried yet, I want to but the tears won't come. I am more annoyed. But this set of feelings also makes me want to purge out stuff again, so perhaps I can make a slight dent in the mess in my office. Who knows?

I am torn about going to work, my brain is just not with me, but I will try this tomorrow, I guess. For half a day perhaps? I just don't know. I feel like I am pretty checked out of other things in the world right now. I want to see movies that make me laugh (but recent Netflix choices are Letters from Iwo Jima and Flags of Our Fathers, not exactly hysterically funny stuff). Perhaps I should sneak out on opening day and go see Hairspray. Yeah, that might be exactly the ticket . I think it opens tomorrow or Friday.

Sofie will be ready for pick up in less than one hour, so I have to sign off now. I am now rescheduled for chemo the next three weeks (this new one is three on and one off, three on and one off). The side effects "might" include all the usual suspects plus thinning or loss of hair. Now the dilemma, do I cancel my haircut appointment for next week if I am about to lose my hair anyway? Doesn't seem pragmatic to spend $50.00 on haircut for no reason! Probably I will. But will wait a day for that!

Yep, cancer does suck. Just when I am in a rhythm about treatments, as I was in recently, all hell breaks loose. And once again, the cancer is in charge and I am just an audience member.

Family Pride

I forgot to write this, but Jamie was asked to do a "guest blogger" piece on the Family Pride website (their Director Jennifer and much of their staff was on the cruise and did several workshops).

I also wrote a response, below. But better for you all to visit the Family Pride blog and read it yourself.
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I am so proud of this blog piece.

I am the “other cancer mom”. I wanted to add a few things from my perspective. Other than our door which announced to any and all (on the ninth deck, at any rate), our status as women with cancer, I made a decision on this cruise to be “cancer free”, meaning not to bring it up with anyone who did not already know. That was a wonderful break from what has been over a year and a half of having cancer kind of take over my (our) lives.

I also want to congratulate Jennifer and Family Pride for the workshops and for their work in general. I just finished reading the lead article in last Sunday’s NY Times Magazine on donor eggs and the ethical issues that are prompted by this type of decision. After reading it, I just might write my first ever letter to the editor. What it comes down to, really, is that Love Makes a Family….and the other issues, to tell or not to tell, really surprised me. Our community has been dealing with all sorts of reproductive issues for decades. We get to deal with the meaty stuff, the “who is the mother” part in areas that simply reject second parent adoption or with people who won’t accept it. How can someone even consider that concealing the truth might be “better” for their child? Oh, and did I mention that most or all of the people in the article are heterosexual, so they don’t have to deal with what the legal system in our country thinks about their family. They assume, and rightly so, that the child they bear with donor eggs will have all the legal rights of any other child. Of course they do.

Telling the truth about our lives, being out and public and pro-active and assertive with schools, camps, doctors, therapists, just about everyone, is, in my opinion, the only way to make our lives real. I would never consider lying to our daughter about her origins. She is adopted from Eastern Europe and has known this since she was not quite three. You answer questions with honestly and make the answers age appropriate.

She tends to be kind of invisible as an adoptee, since she is not part of a transracial adoption. As an older mom, I am sometimes (all too often!) asked if she is my grandchild. She doesn’t look anything like me, if anything, she more resembles Jamie. But the important thing is that she knows her story. And that she has two moms. She knows that you don’t have to look like your parent(s) to be part of a family. The first week I moved to North Carolina, while opening my bank account, she “outed” me to the bank teller by simply stating “I have two moms…and a bug bite”. She tells everyone that she has two moms. I dread the day someone tells her that having two moms is bad.

Our children are loved beyond measure. On the cruise, I was moved sometimes to tears, just watching gay dads with their babies. I guess I am kind of used to the moms, but seeing so many dads was joyful. I want Sofie to grow up in a world that celebrates family and love. Family Pride will help us get there.

Not Knowing

So after the bliss of several treatment free weeks, and a vacation, I feel physically pretty great. The only problem has been this persistent pain in my left hip area, for about three or so weeks. At first I thought it was from sleeping "funny" or perhaps from the massage I had before I left for vacation, but it would not improve. It made going up and down stairs on the ship hard to do. Fortunately there were elevators, but going one floor up or down made me feel weird.

Today I went to the Oncology Clinic and was scheduled for chemo, as per usual. I had gotten my bloodwork results yesterday, the CA-125 was up 8 points, but that was nothing to worry about they said, I had been off treatment for nearly a month, due to the low white count last time and the trip.

I mentioned to the new fellow (a very young looking woman, Dr. Jewelle) that I had this hip pain. She stepped out of the room after her exam of me and was gone a long time, talking to the other doctors (my doc was out of town, but Dr. Secord was there for this appointment). I was reading and she popped her head in to let me know they would be back soon.

After another 15 minutes or so, I started to worry a bit. And just like that, the whole team arrived. They were concerned too, and had already cancelled the treatment. I have a CT scan this evening to see if the lesion (which feels larger to my touch and theirs) is truly growing and to see if there is anything in the hip area.

It is not like my brain has not already gone there, is the cancer in the bone now? Is is not working even if the numbers have been going down nicely.

I have to wait and the waiting is so hard. I don't know what the next steps will be. They discussed new chemo regimens, etc. Oh joy, another, which will be the fourth for me. I have to get used to all new side effects yet again. But bottom line, I am not ready to give in or give up to this. I don't know why it seems to be taking the direction it is, but I am not ready!!!

I want to scream this from a mountaintop. I have sort of been working with a seven year perspective, enough time to get Sofie through primary school, into middle school, etc. So I will await the results of all of this and pray that they can "manage" this too. My body does not seem to be cooperating very well.

We will be going to supper at Whole Foods this pm, I am not in the mood to cook. Or eat for that matter. But Sofie will be starving, she started Camp Riverlea yesterday, this is the camp that she loved last year and the one that makes her sooooo tired.

I will post more, as soon as I know more. Keep me in your thoughts.

The Blog from the Boat

This is the first day I have visited the Internet Cafe here on the Norwegian Dawn. Which says a lot, since our cabin is on the same corridor as the cafe! It has truly been a relaxing time so far, from a lovely first evening of Broadway show music to tonight, when we plus Laurie and Maya (friends from CA) went to have dinner together, Teppanyaki style (like Benihana). There is a big party tonight on the private island, but we have heard the rumors about the bugs at night, so we are declining. Sofie and Jamie are on board, "exploring" parts of the ship. We spent the whole day with her today, no Kids Crew (her request) and she swam, swam, swam for several hours earlier, then lunch and then we took a family nap. It has been like that, doing things that make us happy, but not going crazy.

We disembarked at Key West yesterday, it was HOT and humid and full of tourista stuff. I remembered my first Olivia cruise, where I loved riding around on bikes, but that was in February or March and I had forgotten that part. The weather was so hot that we ran in and out of tacky souvenir stores just to cool off. Had a key lime slushie and a key lime cupcake (theme developing here) and Sofie picked out a very lovely snow globe to bring home. And then we got back on the ship.

One of the best features for kids here is the Kids Cafe, where they serve themselves and also can sit at the little tables (with or without parents). My knees tried it one time, but that was it, I could barely get off the stool!

This is truly the way life should be in terms of families. There are lots of gay dads with babies, many kids of color with Caucasian parents, and all sorts of assorted aunts, uncles, grandparents and more. All with a Broadway flair thanks to Rosie's passion for all things Broadway.

Sofie has been quite assertive about what she wants to do, gets outvoted occasionally when we want to see an evening show or go to a workshop. She told Jamie that the world was "this much" (arms opened wide) about her and "this much" (fingers showing about an inch of space) about us. Uh huh.

We are at sea for a few days and then this magical time will end, all too soon. I have another book to read and more tan to work on. I have spent the time here hardly thinking about cancer at all, I don't talk about it to folks although our very fabulous decorated door, thanks to Jamie's creativity, has been viewed by many. But I had decided to be mostly "cancer free" in my time here and that has been great.

OK, I will post more completely when we are home. Meanwhile, hugs to all, especially to Ellen and I will share more of the silly, fun stuff later.

Lucky Sevens!

Today is 07/07/07 and today we all got on the boat. It was a bit chaotic but also similar to lines at Disney, long ones. Our luggage was left with the red tags on it, and will be delivered later. Sofie's swimsuit is packed in the carry on bag...she is determined to jump in and swim right away, we have been telling her for weeks about the kid's pool and the water slides! We are a bit overwhelmed I think, by how big the ship is, but it is beautiful and we have a great room. We have a little balcony, overlooking the port right now, but soon, we will see ocean and maybe dolphins! Space is small and efficient, but there is plenty of room in the closet and dresser drawers (all three of them) for our stuff. I hope I have not brought too much. Laurie and Maya are right across the hall, they don't have windows or even portholes, so Laurie asked for visitors rights to our balcony. Of course, it looks perfect for reading and relaxing. This evening is the first show, a Broadway revue type thing. I love that stuff, I cut my theater teeth on Broadway shows as a kid, so I am ready and excited about it. Rosie will host. I have no idea at this point how visible she will be on the cruise, in the HBO documentary "All Aboard!" she seemed to be out and about a lot. I will try to keep notes on this fabulous vacation as it unfolds. Jamie has brought great stuff to decorate our door, so our lives will be an open book for the room stewards and everyone on the ninth level. The staff here are so nice, and they not only make up the room, they have nightly turndown service. Ah, vacation.

Truly, Really on Vacation

We are in NYC, at the Manhattan Club, right across the street from Carnegie Hall! I still feel like an educated tourist, but I am liking it here much more than I recall from summers as a high schooler coming into Manhattan.

We are spending two nights here before boarding the Norwegian Dawn, our cruise ship!!! We are beyond excited, Sofie is too.

Sofie and Jamie went to the Central Park zoo today, to see penguins Roy, Silo and Tango from her book, Tango Makes Three. And I took a lovely tour of this facility. I would love to come to NYC more, now that I live on the East Coast. Perhaps I will do that, in the future.

We are chillin' right now, and then I am taking Sofie to Times Square to the giant Toys R Us, and then....to see her first ever Broadway play, Mary Poppins. We got two free tickets, Jamie is visiting her friend Bec tonight, so we are taking this little risk and going. Worst case, we leave before the show is over if she is exhausted or tired. But I hope she will love it as I loved going to theaters when I was a kid. I want to share the experiences I loved with her.

Sofie is still a challenge to travel with. Her restaurant manners are still terrible, as evidenced by lunch today...at Veslelka, the Ukrainian place on the lower east side. We actually had a great meal, very authentic, and she loved the beef stroganoff. But her wiggling got to me somewhere along the meal. Jamie and I shared our food, perogi's of all sorts and soup (cold borscht for me, yum) and a small blintz with raspberries for dessert. We were stuffed and happy. No dinner will be needed tonight!

We even had a celebrity sighting: Chole Sevingny from "Big Love". By the end of the meal we were sure it was her, although she looked younger and more "ordinary" than on TV of course.

OK, it is time to get out the door, so this is it for today. Will keep up the blog during the cruise and post after we return to land.

How I Celebrated the 4th of July

Last minute packing! Actually, the re-arranging of things, one switch of shoes, one more look for my beach/water shoes (to no avail, where the heck are they?) and a lovely BBQ lunch outside with Deb, our current house guest.

Sofie has made her toy choices, I had to set some limits on the stuffed toys she wanted. But she has some that she loves (snakes (2 ), foxes (2) and a tiger (1). Also art stuff, a box of UNO cards and of course, blankie. Unwashed and disgusting as usual, the way she likes it.

Doubtful we will need lots of toys, I am sneaking in some of her reading practice books and one chapter book for us to read to her. We should have plenty of fun stuff to do, plus swimming to keep her happy and contented.

We might go to FAO Schwartz in NYC, if we dare. Or the giant Toys R Us, but mostly we plan to be mellow, eat NYC foods (pizza, real bagels and of course, Ukrainian, doesn't everyone eat that?). And we are excitedly looking forward to Saturday at noon, when we can board "our ship" and begin this cruise we have talked about for months.

I feel positively blessed today, a perfect day, not too hot, slight breeze, a wonderful friend visiting and I am packed. Well, mostly.

Bon Voyage to us. We hope to take lots of photos and write in our blogs (but will publish them when we are back, since it is expensive to access the Internet on board). If we dock and happen to see a Starbucks, well, then maybe. If the wireless is free!

Yay, we are so excited. Can you tell?

Help for the Packing Challenged

Today is my day to pack for the trip, Jamie is with Sofie all day. It should take less than two hours, right? It is one week, casual, and I am trying not to overpack. I have had a list for nearly a month now. But I can feel items sneaking on to the list....the cool Frameline T-shirt Alan just sent to me. The "extra" pair of slides that look nice with black pants. I am going to lay all the stuff out on the bed, and really try hard NOT to overpack. I need a 12-step group, but too late for this trip.

Last night, since Jamie had Sofie then too, I went out to Squids (my favorite after Friday work day place) with Betty Prioux and although their claim to fame (especially at happy hour on Fridays) is a peck of raw oysters, we sat at the regular tables and shared an amazing dinner of calamari followed by lobster. It has been at least ten years since I have eaten a lobster. Since that time, they have gone way up in price, but I still loved the taste. And half was plenty, it is filling. Then, since it was only a bit before 7 when we finished, we decided to see Evening, which had just opened. I heard the reviewers were so so, but the cast alone was worth seeing. I rarely let a reviewer, especially a male who reviews a "women's film", guide my choices.

The 7:30 show was totally sold out, the first time this has happened to me in this area. So we took a deep breath and got tickets to the 10 PM show, and sat at Starbucks for a long time, chatting and drinking coffee to help us stay awake. We left the theater at about 12:20 AM. The film was exquisite. That is about the best one word I can come up with. Not perfect, but lovely both visually and for the performances. I am always amazed at actors who are British or Australian who speak with American accents.

OK, no more procrastination, it is upstairs for me, to do the packing. Wish me luck.

Pesky Little White Blood Count

So, we are in pre-vacation mode, with packing lists galore, and trying to make sure we don't forget anything, yet still pack light. This past week was supposed to be chemo number 12 of the six cycle, two treatments per cycle regimen.

So Monday I feel totally punk. I get to the lab and have the blood drawn, leaving the port accessed for Tuesday's chemotherapy. We have a nice system, so I don't have to be stuck twice. Anyway, the new person sticks me and the blood doesn't flow back into the syringe. Never happened before, but she is training (Duke is a teaching hospital, so you just know this stuff happens). After a couple of exercise like moves (right hand up in the air, head turned to the left, cough, etc), the blood flows out and all is well. I am lightheaded by now.

I get to the parking deck and kind of sit there, wondering whether or not to go to Chapel Hill or back home. I finally call work and say I am not coming in. I get home and immediately crash into a deep sleep, which only the phone ringing an hour or so later can wake me.

I felt kind of punk all day, just tired, queasy and out of sorts.....then I got "the call" from Teri. White counts too low to treat me on Tuesday!! Did that stop me from getting my nails done the next day? Of course not.

On Wednesday I had yet another clinic appointment, at the coagulation clinic this time. Lots of hurry up and wait, but I was there for a full check up and discussion of the blood levels. Suffice to say I am on that injectable stuff for a while more, we might move to the pills (first to see how they work, which means frequent blood draws again while they are regulating me).

Thursday and Friday (today) I have been at work. The good things about the missed chemo are less nausea and more time to feel better *before* getting on the ship!!! And the chemo I have had has left me with little hair to shave pre-cruise on my legs or arms. A nice bonus, that.

Packing light. Packing light. My mantra. Tomorrow, we will see how it works (or if it does!!!). So excited about this vacation. Cannot wait to take off for NYC, where we will go see the gay penguins in the Central Park Zoo and eat Ukranian food (two examples of our plans) while pacing ourselves, not too much to do since we are on vacation, not "real life".

I procrastinated until the last possible moment then went ahead and ordered a beach cover-up. That is what they call them, but more like a tent for my body. But the bathing suit in public issue looms only a week away and I chickened out from just wearing it with shorts to the pool. I want cover!!!

Sofie is getting quite excited as well, and is doing a lot of drawing at her camp. Snakes mostly. We are so not surprised. She likes camp.

When we get home, we have to move quickly into gear to get her 7th birthday party going on, a pool party at the condo. Rain date and all (it is that time of the year).

Personally, I love those summer storms. They soak the garden so I don't have to, and make life easier of course, eliminating a watering or two. And they are heavy enough sometimes to rinse off the dusty car.

Some Musings About Target

You know, you can tell a lot about the world from Target. Everyone goes there, right? Fess up, you know you love it. Today, while I was watching the world go by for a while at Starbucks, right inside our SuperTarget, I kind of crystallized some observations I have been able to make lately.

If you go to Target about 10 AM on a weekday, you are there with young mothers with small infants or toddlers in the carts, and older people. By older I mean much older than me, with the white hair and quad canes. Target is sparsely populated in these early shopping hours, but it is easy to get in and out quickly. Not that I feel I have to do that, but you could.

In the later afternoon, the moms of preschoolers and some grade schoolers are there, kids in tow, as well as high schoolers and others who are out and about after 3 PM. The little snack bar area is much more full of folks indulging in an emergency bag of popcorn or other snack food. People are more likely to impulse buy, either for the kids or themselves, then, I think. You know, you have been at work part of the day, you are more distracted, etc.

When I have been on leave, these are the times I am most likely to be there, browsing or shopping (or just having a grande iced coffee). Shopping at Target is much more peaceful in the "off" hours. Before the food store rush right after work, the Saturday errand madness or the later in the evening, cranky kids, parents trying to squeeze in a few errands before feeding their brood from the nearby McDonalds kind of time. And the sales associates are more rushed, less warm and fuzzy, you know, like the rest of us!

My time as a "stay at home" sick person has led me to these random thoughts, blame it on that. The "advantages" of medical leave, I guess. That and being able to have a leisurely mani/pedi in the middle of an afternoon.

Not too high a price to pay for queasy stomach and lightheadedness, right? Oh yeah.

Out of Nowhere

The weekend went well, no nausea to speak of and just the general fatigue. Nothing too busy, we did a swim play date yesterday, like many we did last summer. It was hot but not unbearable.

Today (Monday) was labs in the AM, then I planned to go to work until my acupuncture appointment. But no, my body was having none of that.

I got nauseous this AM and kind of puked a bit in the kitchen sink as I was preparing Sofie's lunch. I switched plans and did a simple lunch (I keep those "Lunchables" on hand for just this purpose), avoiding the tuna smells I would have made a bit earlier. That seemed to work. I dropped Sofie off at camp and turned the car around to go back to Durham to Duke and the lab.

At the lab, the new person Kathie could not quite get the blood to draw back (flow) out of the syringe at first, so that took some acrobatics, I ended up raising my right arm and looking to the left (this was the third or fourth "position" suggested by Connie who is training Kathie). Anyway, finally it worked just fine, only the one stick, but when I sat up, I was lightheaded. The smell of the antiseptic had done a number on me and all that pushing and tweaking too, I guess.

So I sat in the parking deck trying to figure out what to do....I ended up calling work and just saying that I could not come in. I hate feeling out of control, and after a more or less non dramatic weekend, this came from nowhere.

Ah, but later in the day, Teri (nurse specialist on the oncology team) called. So there was a reason! My white count is tanking. My bone marrow must finally be pissed off and is low. Too low for treatment tomorrow. My neutrophils (?) are low too, under the standard for treatment. So I get a break, a week "off" without all this. Good for the vacation! My red counts perked up after the transfusions of last week, and that is good, because if I had the fatigue on top of the sickness feeling from the white counts, I would be a total mess. Will rest more tomorrow and then see how the week goes.

Sofie started tutoring today, with Ms. Ewald (aka Susan or Susi) her assistant teacher from Morehead Montessori. She totally "gets" Sofie and is excited about working with her. Goals are simple, to keep the gains she made and get her totally ready to enter the second grade. If this goes well, we could even do a bit of tutoring in the fall, perhaps once a week instead of twice like summer. We will see. I would kind of like to see if Sofie was interested in Brownies (the Girl Scout kind, not the eating kind) for fall. Or some sport, perhaps basketball. But don't want to over-schedule her either. She does better with a clear routine and that means (especially if I am back working more) that she comes home, hangs out a bit, then does homework either right before or right after dinner.

But I jump ahead. It is summer, we are off from school and that means both of us. It is a pleasure to just read together, not have to do homework each night. But she needs the practice and better with Ms. Ewald than with me, she really works hard to please her.

Once again, I feel lucky to have this person in our lives.

Bad Haircut

I have been meaning to blog a bit about this, for the past two weeks. But the life issues have gotten in the way. About two weeks ago, I went to get color back in my fading back to grey hair and since it needed a trim, went ahead (with a new person) to get it cut. It was a disaster! I was wearing glasses so they were off and I could not see what she was doing. By the time it was done, it was too short, and when it dried, almost looked like a (dread the thought) mullet in the back. I went back to have it "fixed" in the back, which helped some, but it is just not the nice, curly top of hair I had last month. I know it will grow, but I feel like a shorn poodle sometimes.

To try to take other's minds off the bad haircut (which most don't seem to even notice, but I know), I have been dressing a bit more for work, I got several new skirts (yes, skirts, which I never, ever wear in the fall/winter), and have been wearing them to stay summery cool. And I have to admit, I kind of like them. Kind of girlie, I know, but what can I say? It is working for me right now.

I have made a total packing list for the upcoming cruise, to help me keep from my usual over packing obsession. I am really trying this time, not to overdo it. The cruise is more casual than some, and there is "freestyle dining" so no formal dinners with a particular group of folks. Should be quite fun, I think.

Sofie is easy to pack, her whole list will fit in such a small space, since her clothing is so little. Bringing a lot of bathing suits for her, since this little fish girl will want to be in the water a lot, we bet.

Only two weeks to go! Very exciting, I am finding it hard to stay focused (at work, at home on projects, whatever), and I know that I am really looking forward to this vacation. It has been since 2004, fall, that I have been on a vacation that is not visiting friends and family (not that those haven't been fun, but not as relaxing as being on an upper deck with a cool drink and a good book). I have had tons of time off, but that simply isn't the same, not the same mindset, anyway. And honestly, having cancer is a half time job in itself, it takes time for all the appointments, managing the drugs, etc. So I am very ready and getting excited about having to actually pack this stuff up.

Deb McSmith will be arriving right before we leave, so we should have a nice visit for a few days. She has been in Thailand and Cambodia, among other locales, and will have great tales to tell. And after those climates, our weather won't seem all that hot and humid, perhaps.

OK, two weeks to encourage my hair to grow. I think I will go back to the herbs I took when I was bald, to encourage the hair growth!

Heart to Heart

Yesterday at my clinic appointment, I participated in a new study group about how doctors communicate with cancer patients. They began by asking a series of questions about where I am mentally, emotionally, etc. I was actually surprised at all the positive answers I gave, but truly, mostly I am fine and grounded and such. Unless I am in such denial that I don't even know that I am lying through my teeth, but seriously, I don't think so.

Then I had my appointment, first with Dr. Amy Bland, a second year fellow. She has only a year left, good for me, and then she will leave, and wants to go to possibly N. California. So you lucky left coasters will get to have her, she is terrific.

Excellent news on the CA-125 front. It dropped from 88 to 64. They are going down more slowly than when they were in the 500+ levels but that is to be expected. Down is still good!

Dr. Valea and Terri came in and we had a discussion about "managing the cancer". Managing the cancer is code for this is not curable. It will come back, they cannot say when, and then we will keep trying with the chemo combo that seems to be working until it doesn't. Drug resistance is what happens to many and I am sure to be on the top of that list, since my body rejects a lot of the toxic chemicals they try to treat me with.

So we might move on to adding Avastin, a biologic that is made by Genentech. It is very expensive, but fortunately for me,it is covered by my insurance. And I have friends at Genentech if I need to score some for free from the inside.

SPOILER ALERT!!

The next couple of paragraphs deal with tough issues, so if you are wanting to believe I will live forever, don't read any further!!!!



And then, after Dr. Valea left, Teri and I had the heart to heart about time. So, I asked, I don't have say 15 years? No, not 15. How about ten? No, well most have between 2 and 5 years at this point (we are talking time between now and dying). I said, "well, this is me we are talking about, so let's add two more years for feisty-ness and call it 7." Which would take me to 2014, Sofie would be in middle school (hopefully DSA) and we would have had seven more wonderful years. I would have a sense of what type of grown up she might turn out to be. And she will be better equipped to deal with her mom dying, I hope. Not that it will be easy, but better than at 8 or 9 years old. It is hard to think about but on the other hand, it makes things more clear in terms of what to focus on and put time into.

And Jamie will have had a lot more practice at being a mom, she keeps rising to the occasion, so that is good. And Sofie is fully comfortable with her in that role. Probably she would move from this house to another house to have a fresh start. But that is too far away to think about.

We have talked about this house, which is affordable (good) even if I go on half pay due to short term disability. And we have discussed moving to a house with either a first floor master OR a one story ranch style house, because doing the stairs some nights even now is too hard. But mostly I can do that fine in the AM, and so I do things that way. Anyway, the housing thing is hard to make a call out on. If I stay here, I can create a master suite downstairs, and enter via the outside steps, which are less steep, or perhaps even create a ramp (but it would be steep). OR I can continue upstairs, the house is wireless access now, and I could get a laptop, far less construction needed for that. Moving always makes me anxious, because of all the packing and unpacking. And I love this house, mostly, except for the never-ending lack of storage for all the clothes she has to grow into and stuff like that.

I am pondering on what having two to seven years to live means. First, it could mean that I exceed the expectations. I have insurance (Term Life) that is good until I think Sofie is 22. Then if I am still alive, that ends. So living until she is say 19-21 means she is covered for the future. And that is important to me.

It does mean that saving for retirement is not a high priority anymore, I will continue the % I do on a monthly basis, but that is all. The rest should be for living well now, so that we continue to create memories, and I can travel with her each summer, until I cannot anymore. I want her to love travel the way I do, and to see Africa, because that was such an amazing trip for me.

We also have plans, made in 2002, to take her to Paris with her Godmother Barbara when she is twelve (2012) and possibly to Ukraine. I did a birth mother search for her recently, and unfortunately, it did not lead to finding her birth mother, who may have used a fake name (she for certain made up the address) and there don't seem to be any leads. But I tried, that matters.

I want quality of life, which to me means that I continue the treatments as far as they go, but when they start to fail, I stop, so I can enjoy the life left to me without nausea! I don't want to leave her too soon, she is delightfully changing so much right now. But I also want to be realistic, and that means knowing that my life is not going to be as long as I might have planned (coming from that Dannon yogurt eating Russian stock that lives past 100).

So the next few years will be interesting. I will work as much as I am able, then see what I need to do to make it work for me to live but not work all the time, since living seems more of a priority. And we will take the summer to travel some, and enjoy our time together.

Mortality. It is a gift to know that it is limited. It cuts out some or a lot of the bullshit. And makes it even more important to tell people, like those reading this blog, that I love them and I thank them for loving me so well.

This will be tough news for my family, I think we were all hoping for a cure. But life has it's weird pathways. So mine is taking a turn that I had not expected 18 months or so ago. I am glad I will be on this journey with folks I love and trust. And of course, I will keep you all posted.

Because it is my nature to make lists and plan things, I took some time to outline the travel plans through 2012. Here you go:

2007 R Families Cruise

2008 Playa del Carmen, Mexico (Mom is turning 80 this year and it is her choice of where to celebrate)

2009 London

2010 Hawaii? Or maybe a Grand Canyon road trip.

2011 Africa (she will have graduated fifth grade this year)

2012 Paris and possibly Ukraine

2013 and beyond....I am not sure, I have always wanted to go to Greece and Australia/NZ.

So I will be needing a lot of miles!! (smile). I actually have been saving up miles for a long trip, on British Airways, either to Africa or the Ukraine one. I probably will use them for Africa, just to be sure I get to use them.

And in between this lovely itinerary, we also have lots of regular time to make special and ordinary, but fill with love. That is the most important part.

Visits from Friends

Did I not just write about how lovely and relatively cool our weather has been? OK, not anymore!

It rose to the 90's today so the air is blasting in the house....weather can change so fast, you just have to adapt.

This past week, I visited with two friends on separate evenings (what? Two evenings of adult time in the same week? Amazing!!!!). Kandy Ferree was in from DC and we had a great visit in Greensboro, (about an hour from Durham for those of you who are geographically challenged). Kandy and I caught up on some gossip, and had a great dinner (wonderful restaurant and no crayons were even offered to us, my new standard for adult dining).

Then Katherine Haynes-Sanstad (formerly from CAPS at UCSF) and I went to dinner in Chapel Hill, where she is for a two week intensive business oriented seminar. I took her to Mama Dips, a legendary southern style place, great for wonderful food (much of it fried, but it is southern cooking!). We also caught up on the comings and goings of old friends, the joys of parenting, and life in general.

Instead of making me sad, these visits brought me a lot of joy. The fun in reconnecting, the wonder of how life ebbs and flows, good things and not so good, that happen to us all.

Life is what happens when you are making other plans...I used to think there was something to that saying...but in fact, life can be enjoyed greatly in the moment, without making a lot of long range plans. Or making them, but knowing that they might change quite a lot!

This past week, I heard news of two couples, both men, that have broken up. That kind of news still makes me sad, I guess I still want to believe in "happily ever after" even if not for me. Love and relationships are so painfully hard it seems. I am not even thinking of that for myself these days, I have enough on my plate just scheduling treatments and follow up visits, trying to work and parent and having the energy to read a good book. A relationship would probably tip me over the edge! Or am I saying that to avoid one? Either way, I am not missing that too much these days. And I am learning to enjoy my own company on rare Sundays like this one, when Sofie is with Jamie and I have had the wonderful opportunity to spend two who consecutive hours reading the NY Times with Peet's coffee in my cup. Those sorts of little extravagances seem like total bliss sometimes. I have started taking the NY Times again on Sundays, usually it takes a full week for me to read through most of it (basketball is over, so I don't give the sports pages much attention). But on a day like this, it is wonderful to read as much as I care to without any interruptions.

The Cool Breeze of Summer

It has been cool for the past couple of days, a lovely present. After a weekend that was hot and humid, the weather fell into the low to mid 70's during the day and we have had a couple of those wonderful summer rainstorms as well. Great for the garden plants which I often forget to water until they are drooping.

The other tooth came out at camp yesterday and now she has that great gap in her mouth. She is proud of her new teeth growing in and looks so darn cute with the little gap in her smile.

Summertime pacing seems to have set in and I have been lax in getting in touch with her tutor. We will be having her tutored this summer, so she retains all the stuff she learned in first grade and keeps her skills up. Another reason why year-round school would be better. But we are in the traditional system and so I hope the extra attention (which she is none too happy about) will help. Jamie just ordered her some books on snakes (eight to be precise) which should help with her reading. She loves her snakes.

Camp has a secondary benefit, which is that she gets really tired by the end of the day. So that means getting to sleep in the evenings is easier. And that means I get to have a bit more down time to myself, which is great too. I am reading a terrific book by Jodi Picoult called "Her Sister's Keeper" and I find myself wanting to get into it each night, until I cannot keep my eyes open. I love reading like that. And I want to do more! Thank goodness vacation time is coming.

We are three weeks from leaving for the cruise and that is so exciting. I made a packing list which I hope I can stick to, so I don't overpack. My tendency is to pack for all occasions and I want to hold back so I don't have a ton of stuff to lug onto the ship. I think this cruise is more of a casual thing, so not a cocktail dress up kind of evening. Oh sure, some will do that, but these days that someone is not me!

I have been at work all day, but it is nearly 3:30 and the energy left my body at least an hour ago. So I am simply hanging out for a bit, then I will leave. The whole re-entry thing has been hard, getting my brain to wrap around what I should be doing here. Lately, I have been trying to imagine what it would be like her "if it worked according to my master plan". That is actually a good exercise because it is opening me up to the possible again. It is all too easy to become discouraged. To feel like I have "been there, tried that" and it all is crap and doesn't work. But like the change in the weather this week, the climate here in the library is also changing and perhaps there is an opportunity to make it work better. I certainly hope so, since this is a terrific place and everyone who has reason to be involved with the Library knows it. It is just not what they think of first when they give money.

The First Visit from the Tooth Fairy

Note: for more on this topic, visit Jamie's blog

I won't go into the gory (for me) details, but this past weekend, while on a little beach trip to Ocean Isle, Sofie lost her first tooth, the one on the bottom. She has been slow to lose her baby teeth and I was thrilled that this one was out before she was seven. That night, we carefully placed the tiny tooth in a plastic bag and left it for the tooth fairy. Who left her two dollars! The going rate for teeth has certainly gone up since I was a kid and we got a quarter. Yeah, I know, inflation combined with several decades in between.

The whole beach trip was fun, albeit HOT. The temperatures were in the high 90's both days and although it cooled down some at night, the daytime was a sweaty mess. Sofie did not seem to mind, however, and wanted to spend as much time on the beach and in the pool as possible. We met another kid from the Durham area, so perhaps her friendship circle is widening yet.

If you have read Jamie's blog, you know we also had a late Friday night/early Saturday morning incident with one of those painful earaches. The kind that you know will respond to the pink bubblegum flavored medicine (amoxicillin) but you have to see a doctor to get that. So off we went, to the emergency room at a tiny local hospital. Well, let me tell you, they rocked compared with Duke's ER. We were the only other folks there, so we were triaged pretty fast, the doctor on call looked like he was from central casting and they could not have been nicer, no surly folks in that place. I figured with the less than one hour wait, the next time I need an ER I might be better off driving the 3.5 hours to the beach than going to Duke where it took 9 hours to be seen. Probably not realistic, but still.

A dose or two of the pink medicine (which she loves for some disgusting reason), and the ear felt better and Sofie was all about the beach and the pool again. And today she started her first week of camp, at Hillsborough Sportsplex, where she will ice skate and swim daily. The packing list for her bag to take on a daily basis is daunting, but she came home today all full of energy and excitement, having had a great day. And you cannot really ask for more than that!

I worked a full 8 hour day today, as we had a small event at work. I came home and promptly fell asleep for an hour, until Sofie and Jamie arrived. I was totally tired. I plan to work at home tomorrow, just to conserve energy.

And another tooth is loose so the tooth fairy might be making another visit here, and soon. I love that toothy grin that kids get at Sofie's age. And then those big teeth that look too big for a while, until they kind of grow into them.

The L Word

No, not the hot Showtime drama (comedy?) but *Lice*. Head lice. The school gave the call yesterday. Three of Sofie's friends, not classmates, are infested. Infested, doesn't that just say it all? I have lived in dread fear of this for years, since she began childcare. She managed to get through one family day care and two preschools without so much as a nit, but today, three girls were positively ID'ed. Our friend Susan's daughter Emma's classroom is evidently ground zero for this attack.

Sofie did not complain of any itching yesterday or today, but we also did not wash hair last night. Ashely her sitter is coming this evening and will be in charge of the bathing. I guess I had better alert her too, but I hope she doesn't bail.

And of course, tomorrow we are to leave for two days at the beach, to celebrate the official beginning of summer, camp, etc. Oh joy, do we have to first do a round of Rid to make sure that we don't infest the entire motel? Eeeeeeeewwwwww.

I have toughed out vomit, bloody knees and this week, her trials and tribulations as she is about to loose her first tooth. But head lice, that is another story. On a normal day I guess I would just deal with it, but today is hardly normal, I have spent most of the day trying not to feel nauseous. I woke up this way, did not throw up but could not quite chase the very tired/very queasy feelings. And when I drove Sue to Raleigh to catch a bus to Wilmington so she can connect with her sister who is there, I felt like I was driving kind of in slow motion, not very clear. I ate something and that helped a bit, but still I feel spacey and it is not fun.

Next week, I hope that I will feel fine enough to go to work Monday and all week. I am eager to move forward, but this stopping and starting for treatment challenges is getting in the way. Carol (my boss) is being saint-like, but I am sure she is frustrated too. And time is slipping away.

Sofie starts camp on Monday, which is another challenge of packing the right foods, the right snacks and an assortment of clothing changes: bathing suits, flip flops for pool, long pants, socks and a shirt for ice skating, not to mention the very cool skates that Uncle Alan got for her on e-Bay. They are way cool, very girl skater-ish and she loved them. And I must not forget the towel, evidently the camp fee does not include one dry towel a day.

This packing and unpacking ritual is repeated daily for all the weeks of camp. Lather, rinse, repeat. Lather, rinse, repeat.

And this is why I get up early most days, so I don't forget a snack or a towel or whatever I am supposed to pack.

I guess I am just in whine mode this afternoon. Lice will do that to a person.

Just Tired

Not in a terrible way, but this weekend, I just felt draggy. Betty and Jamie and I went out Friday PM to see Waitress, a sweet Indie film that actually has been getting good reviews pretty much all around. It was (no pun intended) well, sweet. And sad to know the very talented director had been murdered. Life isn't fair.

Betty and I went for decaf and dessert (really just an excuse to talk more) and I got home around 11:30!!! Not bad for this chemo gal.

Jamie took Sofie home from childcare that night, and whooo hooo, I slept in on Saturday until nearly 8:30 AM, which for me is plenty late. I got going on the first "project" on my list, the cleaning out of the fridge. I usually keep up with it pretty well, but lately had fallen behind, what with guests and all, so I purged things, wiped it all down, you know, pretty much got in in shape as if I were selling the house. I *detail* a refrigerator, when I clean it. I was kind of tired after, so I rested a bit, then began on project number two: finally getting the fall/winter clothing out of my closet so there is room for the paltry collection of summer clothing! This took a while, and I attempted to watch The Last King of Scotland while doing it, but that film required more attention, so I gave that up for the typical home show as background (not to mention inspiration). I made great progress, until about time to get Sofie back, and then I stopped short of getting all the wintery stuff downstairs to the guest room closet where I keep it during the "off" season.

Today, it was raining when we woke up (pouring down hard) and I still made her get going and get dressed to go to ERUUF. We had Children's Chapel first, then I joined the grown ups and she went to a "make your own Chalice" workshop. We reunited after and went to pick up the makings of chocolate cupcakes, as Sofie had decided to throw a birthday bash for one of her animals this evening. We had fun making cupcakes and then settled down (since I was so sleepy) to watch a few episodes of Scooby Doo while awaiting her playdate. Then off to Lucie's for a few hours. Blessedly, they fed her dinner, I finished watching my film (I am not good at violent films, but it was good) and then she came home in time to shower and decorate the cupcakes for the party. It is amazing how this showering thing has evolved in the past two weeks.

From needing to be coaxed into the shower, she is now all about "I need my privacy, I can do it myself". Except I was needed to make the water warmer. And to find more shampoo. And more body soap. But after that, she came out smelling sweet, all clean and with hair needing combing.

Finally after the chocolate cupcake fest, we were snuggled in bed and I had her read to me, then I read two books to her. And before 9, I was done for the night. I am just tired today, I think it is mostly post chemo, I was barfy this AM too. And that was none too pleasant. But I made it through another day, albeit a kind of boring one. But sometimes boring is not all that bad. I am finally at this ripe old age, learning that I can have a lazy weekend and I don't have to feel guilty!

So another week is approaching, with Sue H arriving (yipppeeee) tomorrow PM and chemo on Tuesday again. But it will all be fine, I think, this week. I just have to pace myself. It is cumulative they say, the side effects, so I should not be surprised to feel kind of sick from it all. But I will get through this next one and then there is only one more set of treatments in the month of June. So there. Even if they continue into the summer, I have gotten almost to that milestone.

A Lot of Miles on Her

80,008 as of right now, to be precise. My trusty Subaru "Mom" wagon just turned over 80K miles. Where did we go, putting on these miles? A lot of commuting around the Triangle to be sure, but wow, it is a lot of mileage....

I wonder if perhaps, not for the IRS, it would be good to start and keep logging the daily miles of our lives. It would be an interesting, if sometimes tedious record of the daily and mundane travels of our existence. These days, I feel like my body needs some sort of mileage recorder, to keep track of my comings and goings, to and from Duke, UNC and child centric things.

I have been thinking lately of Hybrid vehicles, how that would be the "right" thing to do. But this will have to wait, I am not the sort of person who buys a car before I need to. The Subaru is a great car, it just did our little road trip to Washington DC and next week, we are taking a short sweet trip to the beach, to celebrate the end of the first grade! And the beginning of summer vacation!!!

Today is a good day. It is warm here now, no denying that summer has arrived. I am usually in denial, until the day the temperature in the Subaru is over 90, then I know it is here. But nothing an iced coffee (shaken if possible) cannot cure. At least temporarily.

OK, Sofie and I are heading out for the supermarket run, to pick up some fruit and to get more meds. I spend all too much time at Harris Teeter, the Safeway in these parts. I know everyone in the pharmacy by first name.

So back I go into the car, we both have a lot of miles on us these days.