Thursday, May 31, 2007

To The Party Guests

This is the text (unedited) that I sent as an email to all the folks who attended the "Friends of Debra" benefit on May 10th in San Francisco at AsiaSF.

Dear Lovely People,

Time has a way these days of simply slipping through my hands, my brain, whatever! I wanted to write and thank you for being part of the benefit party at AsiaSF. I loved hearing you all sing, that was simply wonderful and made me smile for long after the phone call. I was fortunate that Pat Dunn was with me that week, to be on hand for the phone call and the festivities.

And I know you were all feted wonderfully by your hosts Skip Young and Larry Hashbarger and the ladies of AsiaSF. As they always are, Skip and Larry are the perfect hosts and I missed being there with all of you. And missed seeing how the AsiaSF version of the Kentini turned out. I am sure they were perfect. Thanks also to Kerry Heffernan and Chef Wex, to Kelsey and to Natalie, and to Bobbi and Dorian for helping at the door. And big thanks and hugs to Brenda Laribee and Kerry Enright Peachey for all their organizing. I know they all do that kind of like breathing, but it was great to have this in their capable hands, especially since I was told directly not to attempt to plan this myself. Or even get involved!!!

Over the past five months, since I heard the news of my recurrence of this pesky cancer, you have all been a great source of strength to me. I admit to a few dark days, but now I see each day as another opportunity to live fully. None of us really know how long we have on this earth. You are present with me on a daily basis. Not only with the emails and notes and yes, the amazing donations, but knowing that many of you are keeping me in your prayers, thoughts and meditations. I am not sure if it is a cancer thing, or a getting older thing, but all of this does matter more to me now than ever before.

It is interesting, as I sit in my home, typing this email to all of you at the end of a warm summer (yep, summer already) day. I feel tired but not sick today. And I just had the *big blaster* treatment on Tuesday. I have my magic bullet drugs, and I have been good about trying to rest a bit more. My blood levels are low, but not as bad as they could be and I don’t feel as weak as I have in the past. And my white count stays within normal range, barely but it hangs in there. Which is good, since I have that manicure/pedicure habit you all know about.

I truly believe in the power of positive thinking. And that has kept me going, kept me optimistic and kept me from giving in to this cancer for a lot of months now. I often visualize a web, spun of the love and compassion of friends and family. And I am so honored that you are part of this web.

Thank you all for your kindness, your generosity and your love. I am most grateful and feel privileged to know you all.

Much love,


Tuesday, May 29, 2007

The But....

Had chemo early this afternoon, and now home, to quickly blog and pack. Yep, I am attempting to go to a conference for work but not far, in Greensboro, about 1.5 hours tops. For two days, starting bright and early tomorrow AM.

Meeting up with friend Norma from School of Nursing there, for dinner and to catch up.

So today, I had my clinic visit before chemo. I saw Dr. Valea, who has been out more than in for the past three or four visits. But he was his lovely self today. "They" are very excited about the CA 125 numbers going down and he said, if this continues, that will be very good news for you.

And then the But...but it means you may need to stay on the medications for a while longer. What is a while? It might mean until the CA 125 is as low as it will get, under 10 perhaps. And then, I might start again if it creeps up again. Which I hope it won't but....

Scheduled treatment interruptions (thanks to HIV, I am savvy on this terminology) like a vacation would be fine, he said. But this But...reinforces what I think I know, that this cancer recurrence or whatever term they want to use, might be back in some other place, at some other time. And the CA 125 will become what I live around, to see how well I am doing.

The drug combination he is using would be not looked on all that well by colleagues, if I were not doing so well on it. So that is good, in an odd way, I suppose. I am "tolerating" it pretty well, if you don't count the rashing and vomiting/queasiness. And the drugs do make that manageable in a matter of speaking. So Yep, I am " managing" this pretty well. As long as I am drug free (except for the blood thinners) for this cruise in July, I am happy.

About the cruise: Sofie, Jamie and I got a "consideration" for the pricing on the cruise, so it made it more possible for the three of us to go. We intend to make it a very special week for Sofie, starting with a visit to the Central Park Zoo to see the gay (and now lesbian) penguins there. And more. And eat at the Ukrainian restaurant we went to last visit. And make some other memories on the ship.

We could not have planned this without the generosity of R Families cruises and even better, Laurie and Maya (who visited a few months back) will be joining us there....we are so psyched.

OK, must go back a few things and get the heck outta here. More later.

Friday, May 25, 2007

Yay! The Numbers are In

It's so funny, when I called Teri, she said (while looking up my lab results) "well, how do you feel?". I feel pretty darn good today, I get a bit draggy at the end of the day, but for now, doing well. Then she tells me that I am (lab-wise) low but not as low as I have been previously. And true to form, my white count is doing just fine! This is truly mind over matter, because the white count, if too low, would mean that manicure/pedicures should not happen. And I won't tolerate that!

But the best news is the CA-125 continues to drop, from 157 last time, to 88 this time. And there is one more time to go, the June last treatment. So I am optimistic that this truly does bode well, and that perhaps something good has come from this round of toxins.

And you can get used to just about anything, I guess. Even being "blasted" with the drugs.

OK, time to get serious about packing for the weekend. Just wanted to share the good news.

The Debut of Summer

The weather is warming, expected to be near 90 this weekend. Still not with that horrid humidity, but the bugs are making their appearance more and more. This time of year, I find myself wishing for that screen porch again. I debate annually if this type of investment in the house would pay itself back. I tend to think no, but it would be nice to have that additional "outdoor" access without the bugs. A lot of them. I have done a few catch and release rescues and killed some outright, when I am cranky.

I love this month and even early June, for the luscious days without the relentless hot of true summer. Those days are numbered, I know, so I am taking full advantage and appreciating each perfect pre-summer day right now.

Tomorrow we are heading out on a little road trip, about four hours (plus kid stop time) to DC. Will visit with some friends from a few years ago who moved to Maryland and also go to the DC zoo and other places with Sofie. Just a nice little way of spending this weekend, and getting out and about. We come back to a gathering Monday evening with a cookout and music. So it should be lovely.

I worked all four days of this week, about 5-6 hours a day, except today. I find that I am truly tired by the end of a week still. I got labs drawn this AM and have not heard yet what they are, will call Teri about 4 PM today to see.

I am counting the weeks until the chemo is over. Not that it is all that terrible. It is sometimes, not the treatment but the damn after-treatment, but I am just done. I am tired of that focus, bored with it. And I want my life back or restarted or whatever. At work, I don't quite have the focus back yet, but I know it will come, with repetition. My colleagues are so welcoming every time they see me. How could I not want to be back there, despite the challenges of library fundraising? I have to focus, plan, focus, implement, try, try again. And be consistent. The communications part is evolving, although now I have to rehire for the communications manager, as Susan, our temp of one year, is taking a full time position with Planetree there. But we have made great progress in a year's time, considering that I was out for four months, more or less. The home page, which we don't control, is another story. But I have faith even in that changing, eventually.

So, off I go to get laundry done, to attempt organization of my closet in this transition (for real, this time) of fall/winter to spring/summer clothing. It must be nearly summer, I have been wearing nothing but slides for a month now!

Sunday, May 20, 2007

Kindness of Strangers

The day of the wedding was perfect, a nice biscuit breakfast and perfect weather in the offing.

The whole dress thing turned out very differently. I tired all the dresses on Sofie and had a dress reconsideration moment. They all seemed wrong. I knew the other kid would be in a fluffy dress and I did not want Sofie looking like the hippie child. So the "dress stress" began anew!

We all (Jamie, Sofie and I) went to the nail place on Saturday morning, thinking we were getting there when the doors opened, but we were off by thirty minutes and on Saturday morning, during prom season, thirty minutes is a lot. We were told to come back in the afternoon and when we said that wasn't possible, two teenagers gave up their spots for us, so we could get our nails done first. Talk about the kindness of strangers. I ran to Target (right in the mall area) and there was nothing. I was now thinking of bailing.

Sofie and I got red nails, which I hardly ever do, and her toes, which would be unseen during the wedding were bright orange with green glitter. She was a happy kid. We all ended up at Ross for a "quick look" and I found in less than five minutes, a white knit dress, with cute embroidery on it that was $9.99. For that, I figured even if she just wore it one time, it was a deal. Her size too, it was a sign.

We got home, showered, did the hair thing and got ready. Little white Mary Janes (her high heels) and all. I put her in a different dress for the early waiting part, before the guests got there, to keep her clean and we were off to the outdoor setting in Bahama. Pronounced, "Baa- hay- ma". Seriously. The pronunciation of places here keeps me guessing a lot. I usually mess up.

We got there early, Jamie was in charge of her computer and music (recorded via iPods or something) and so Sofie played. A half hour into that, her feet had already developed bad blisters from those damn shoes. With no socks of course. So we pulled out the orange Crocs and that was what she ended up wearing.

The wedding was wonderful, spiritual, loving and very grounded. My outfit was fine, perfect in fact, and I will get lots of use from the skirt I got. I thankfully did not look like the mother of the bride or anything.

Sofie started telling me she was starving five minutes into the meditation that opened the ceremony. I told her nobody gets to eat until they are married. Period, no discussion. She had already had a substantial snack, but she is eating a lot these days.

Sofie and Danielle (the other child in the ring part of the ceremony) were very cute in their white outfits, adorable. They had wreaths of lavender and daisies in their hair. They walked up the "aisle" and got the rings and handed them to Carol, who was the facilitator of the ceremony. And then walked back to little "ahs" in the audience. Very cute. Here she is with Sharon and Tracey, the brides. And Danielle, the other ring helper.

After the ceremony was completed, the bar opened, Sofie was thrilled I let her have a coke. Within ten minutes, she came over to me crying because she had spilled coke all over (and I do mean all) her white dress. No worries, we put the sundress that I had brought as back up on and all was well. There were a bunch of other kids, including a cute little six year old girl (from Oakland, no less) there and they all played happily until the food was served.

The caterers, bless them (or Tracey and Sharon for thinking of it) served the kids first, mac and cheese, chicken nuggets, carrot sticks. Perfect kid food. The grown ups got salmon and pad Thai and marinated veggies. And the cakes, afterwards, were glorious. Instead of a big wedding cake (or the threatened cake from Costco they had talked about) they had eight smaller cakes, all different flavors inside, frosted in white with simple flowers on them for decor. On this magnificent cake stand. Very cool and they were delicious.

This wedding is right up there in the top three for me, of perfect, wonderful wedding ceremonies. Wouldn't you know, all three are same sex: Kerry and Wendy's in in Golden Gate Park in that wonderful Stern Lodge, Geoffrey and John's over-produced extravaganza with candles and gift bags and the whole nine yards, and this one, in a wonderful outdoor setting, with more joy and history of the couple than I have ever seen. Very wonderful. And I am forever glad that Sofie's first wedding was this one. What a high standard to try to match in the future.

I am hoping she wants to talk about it this week for show and tell. But she will probably want to talk about the tiny turtle they found, which she named "Swimmy" and wanted to take home. She cried because she had to let him stay there. My daughter is an animal lover, for sure.

It is 8:30 and we are off to a post wedding brunch at Tracey and Sharon's home in two hours, then to Shrek. Then I will have two hours of alone time, to organize my closet with summer shoes and re-make up the guest room for Barbara who arrives tomorrow for a few days. I am exhausted already!!!

Saturday, May 19, 2007

At Home

Early today, I looked out of Sofie's window (which faces the front yard and the street) and there was a gorgeous red cardinal perched on the railing on the path to the front door. He looked directly at me before deciding to fly away. Simply stunning, this symbol of NC. And they are really everywhere around here.

The weather today will be in the 70's and I wonder if the dress I have picked for Sofie for the wedding will be too sleeveless and cool for her. But she runs warm and will likely be dancing and running around all afternoon, so I guess we will be OK. I will bring a back up outfit, just in case.

I kind of gave up on the perfect wedding outfit and will settle for a nice "blend into the background" spring/summer outfit of black and white. I just rummaged through the off season closet to get shoes, which I still have not brought upstairs for the upcoming season. Found several I forgot I had, so a bit like getting a present.

The house is quiet right now, Sofie is watching cartoons a bit, it is not even 8 am but she was up before 7. We snuggled a bit, then I got restless and wanted to check on the shoe issue. I have to organize myself better! You would think being home all these months I would be the queen of neat, but I am not right now. Going up and down stairs sometimes is too tiring still, so I have that excuse, but it is pretty lame.

Next treatment cycle, when there is not a person here to help, I will simply make a list and start this process. I have to get it together, summer is all but here and I have not stored the winter clothes, have not organized the summer shoes, etc. I used to have this all together, what is up with me?

But I am realizing that I am comfortable here, at home, in NC. Even with the dreaded summer heat and humidity and bugs coming up, I think this will be a good summer.

Thursday, May 17, 2007

In Good Company

Pat Dunn has been the visitor this past week, arriving a week ago on Wednesday evening. It has been delightful so far. We kept telling ourselves we would play lots of Scrabble...we both enjoy it. But we lugged it to the treatment on Tuesday and surprise, surprise, I was taken into the treatment room after only fifteen minutes wait, that never happens. And because this past Tuesday was the "simple" chemo (only one of the two meds, and no blood transfusions) I was out of there and home by a bit past 11. We decided to nap first, since that pre-medication cocktail they give me induces sleepiness. After about three hours, I was up and we finally played ourselves a game.

I got a score over 300 points, and since I have not played for a while, I was quite elated. And one "bingo" for using all my letters, which was less strategy and more luck as they more or less arrived on the Scrabble tray almost arranged into the word "glimpse". How about that?

It has been wonderful having Pat here, she has tackled Sofie's bath, her homework (which was good, since it was on logic and I couldn't figure out the first worksheet by myself, not a good sign). We have eaten in and eaten out, and it has helped me feel supported during this recovery week.

We went to Asheville over the weekend. It had been rainy on the way up, these little sun showers that burst open and soaked everything, but for only 5-10 minutes. We arrived in time for a late dinner, going to Mamacitas, a wonderful Mexican place. Asheville is such a great blend of folks, from trendy to hippie and everything in between.

We spent a lazy Saturday hanging out for a while, then going to the Kid's Museum (Health Adventures) to distract Sofie for a few hours. Then I had to make the Asheville pilgrimage to Discount Shoes. I "bribed" Sofie with a promise of a movie after, but upon arrival, she announced she wanted to get *high heels* for the wedding she is participating in this weekend. High heels from my daughter, who rarely puts on a dress, much less any outfit requiring dressy shoes. We hightailed it to the kid's section where she picked out a pair of black patent leather strappy heels!!!! I protested that those were winter high heels, not summer. Fell on deaf ears. Intent, she strapped them on, only to find out her narrow feet were swimming in them. So the saleslady worked with her, as I made suggestions (all rejected). Her second choice, blessedly, were not in stock in her size: Silver strappy shoes with an acrylic heel with silver glitter in the heel. Great for child prostitution, not so great for the wedding. In the end, it turned out to be a sensible pair of little white mary janes, the key part is that the shoes make a tapping sound, which is why she likes them. I told her they would look pretty with her dress for the wedding. The dress thing hadn't really sunk in and she protested, but I held the not yet paid for shoes hostage and negotiated a deal: she only got the shoes if she promised to wear the dress. It is a cute little dress from Hawaii that Alan and Rene, his partner, found for her. She has not even worn it yet, she will look so cute. She is getting a wreath for her hair, too.

This wedding is one for Sharon and Tracey. Sofie was evidently talking about it at school, because she came home one day and announced that Gemma (her best friend, a girl a year younger than Sofie) told her two girls could not get married. I told her that Gemma was just wrong, that if two people love each other and want to get married, they can. Any two people. And I promised we would take pictures for her to bring to show and tell the next week. That ought to stir up some interesting discussion amongst the first to third graders. I might need to give her teachers a heads up on that one...and some pointers. I did not go into the more than 1,000 Federal benefits that are denied, or that it is technically not legal in the eyes of the NC government. For her, a wedding is to be a celebration of love with some great food. She gets to hand a ring to one of our friends, along with another little girl. Personally, I am thrilled that her first wedding is girl on girl. Let's stir this up a bit, right from the start! And isn't a wedding about love anyway?

More later, I have to go shopping to find something to actually wear to this shindig!!

Friday, May 11, 2007

A Few Heartfelt Words

This is what I wrote to be read to the (I have heard 83) guests at AsiaSF last night. Thanks to Eileen for reading it.

May 10, 2007

Dear Wonderful Friends and Family,

When I first heard the rumors about this benefit way back in February I was horrified. Me, who has attended countless benefits for hundreds of causes: I just couldn’t wrap my head around a benefit for myself.

However, a few of the key organizers convinced me to back off and let people who love me take charge and do it. So, a bit reluctantly, I did. If there is one thing I have learned since getting diagnosed with this cancer, it is to let go of control. And to open myself up to the possibilities ahead of me and to the boundless love in my life.

What I have received in return is beyond my wildest imaginings. The love, prayers, positive energy, good thoughts and donations that are sent my way in cards, emails, visitors, and yes, in care packages and food overwhelm me with joy.

This has been and continues to be a scary path that I am on. As Elizabeth Edwards said a month ago about her cancer, this time, it does not go away. And, although I am hopeful that the lesions are shrinking as they appear to be from the lab tests, I know that the long term prognosis is uncertain. My life is likely to be shorter than I had planned, but I have made peace with that.

I choose life.

I am determined to live fully, to watch Sofie grow and learn and to embrace life with love. Those of you who have been able to visit me in Durham know that I still try to do too much, being my obstinate self, but I am forever appreciative of my visitors, who have helped beyond measure.

Thank you to everyone who has contributed to the Friends of Debra account. Gifts of all sizes add up to make a pretty impressive total! Know that I am using this account pragmatically. I still have my job, no need for short or long term disability at this juncture, thank goodness, but the added on costs of having cancer can stress the normal budget. So the fund has and will continue to make a difference.

And thanks to all of you, for the e-mails, flowers, prayers and cards that brighten my day and give me strength and courage and, most of all, hope.

My thanks to Larry Hashbarger and Skip Young for opening the doors of one of my favorite places in SF for this event. And to Brenda, Kerry Enright Peachy, Kelsey Han, Natalie Smith, Kerry Heffernan and my cousin Jeff Wexler for taking charge of the arrangements.

If I could be there with you, I would be holding a Kentini, eating the delicious food (especially the Asia-dillas) and planning to stay for dinner.

And I would be hugging each and every one of you. So, since I am not there, turn to the person on your left and then on your right and hug them for me. Pass it around.

And know I love you all.


Party of the Year

Was surely held last night at AsiaSF. So many people to thank, but will start with owners Larry Hashbarger and Skip Young. Organizers Brenda Laribee, Kerry Enright Peachy, and chefs Kerry Heffernan and Jeff Wexler. Supporters Kelsey Han, Natalie Smith and Lisa Hoffman and Eileen Blumenthal. Hopefully I am not leaving any of the organizers off the list.

The phone call and singing "Simply the Best" brought tears (of laughter, joy and nostalgia for all of you) to my eyes. Mostly joy. I held the visual of you all dancing and singing on the bar, with the ladies of Asia.

I heard Assemblyman Mark Leno arrived after the performance. I am sure Mark meant to sing with all of you, really. Thanks, Mark.

I hope nobody drank too many Kentinis. Perhaps AsiaSF will make them a regular drink. I would love one next time I am in SF.

How can one woman be so lucky, so loved? I felt that all these miles away. Pat Dunn, this week's visitor, and I sat and just smiled. It is truly a blessing of gigantic proportions.

You are loved back, know that. I want to see pictures!!!!

Wednesday, May 09, 2007

Good News on the Numbers

Yesterday was the treatment my nurse Teri refers to as "blasting me" with the drugs.

Good news on the lab front: the CA-125 went from 309 last month to (drum roll please) 157 this month. Good sign.

Other labs doing well too, red count down but not too much, white count is just fine, low normal, but keyword is "normal".

I was totally flattened by exhaustion yesterday post treatment. I picked Sofie up from school at 3:10 and after a short break for play at home, we went for her pre-camp doctor check up. Jamie and I have decided to use our GP, Dr. Marum, for her from here on out, as her Hep B is no longer an issue. And we have a treatment "plan" for when she gets those icky herpes outbreaks near her eye. So we went to Dr. M and Sofie acted out like a wild child, hopping all over the exam table, not listening, the usual.

Dr. Marum raised the dread ADD label...and the issue of medications. Suggested an evaluation by a neuro-psychiatrist. I know this is probably a good step, but one I have been reluctant to take. But focus is so essential as part of her ability to learn in school. If the drugs could help, should we resist them so much?

The ADD thing has been raised before, discussed in IEP, with Jane, her psychologist, (who thought we should wait longer) and discussed by all of the developmental pediatricians I visited in CA (three of them) over the years from her arrival in 2002 until 2004 when we moved. Then, as a toddler, it was not an issue, the medication thing. But at nearly 7 years old, it evidently is.

I only want the best for Sofie, and goodness knows, I have had to lower my resistance to taking drugs since the cancer diagnosis. I have so many now, I cannot remember them all and have to carry a list around for when I am asked "what medications are you on". For Pete's sake, I am on a first name basis with the pharmacy folks at the place I get the drugs!! And I make weekly visits, since all of them renew on a different schedule. It is just nuts.

I said I would think about it. Will investigate the evaluation, after Dr. Marum reads her old charts, which are chock full of information about her neurological scans, etc. So much "could" be wrong, but what I see is also a bright and inquisitive kid who is impulsive, active and distractable. I want to keep the bright and inquisitive part, while diminishing the other factors. If a drug might help, well, maybe it is time.

Jamie came to the rescue last night, taking over dinner and getting to bed. I had to lie down and before I knew it, was sound asleep. Woke myself up for the shot, but otherwise, slept and slept.
Today, I feel more rested, but still could nap at any time. But I plan to go volunteer in a little while at Sofie's school for the Book Fair. She presented me with her wish list for books, and who can deny their child books? But she wanted one really baby book. Jamie said, "if she reads it, she can have it" so I asked her to read it, which she did, so book is now hers. The others on the list are better, including one on hissing snakes. And a one on Why do Cats Purr? My little animal lover.

Wish me luck today, and from here on out as I deal with this treatment and the variable side effects.

Monday, May 07, 2007

All Systems Go

I found myself anxious today, as I went to the lab. I felt great all last week, and I do today, but it is the numbers that decisions are made by. And I wanted the decision to be the one that said that I was fine for treatment. Plus the CA-125 was done too, and I am praying it is going down.

The white count is good, much higher than last week. Same with Red count and hemoglobin. CA-125 not back yet (more anxiety while waiting) but it will be. So I am a go for tomorrow. Teri, after giving me the good news, reminded me I would be "blasted" again tomorrow, with the combination of the two drugs...oh Joy. I know that I am getting a lot of toxic drugs, but I am hoping that this time, the combo won't put me out of comission for a week, like it did the last time. I hope the new drug works again.

So still a bit anxious, will be until this is done. But no transfusions are necessary tomorrow, so I theoretically should be out of there early afternoon. Good!

Everyone has been telling me that I look "great" and I have had pretty decent energy. Not bad for someone with cancer who is on pot in a pill pretty much 24/7. I don't even feel stoned. Not that I would know what that really feels like. I am resolved to deal with the munchies in a more healthy way than eating tostitos and chips at midnight.

Today I had lunch with Greg, formerly of the Central Development office, now in a new job with the Med Foundation. Just personal chat, nothing too work related, but I hope to establish (from my wish list of things to accomplish here) a relationship via his contacts with surgery department. I have always liked Greg and hope that he, his boss and her boss will agree to something totally "radical" and join forces openly to create a fund for surgery collections here. I won't go on with details, I know they are of interest only to me, but it is on the long ago created wish list for each of the schools. For Medicine, it is that plus a couple of other techniques to partner together and create a system for library support that has not been used anywhere in the country as far as I know. I just want to think (and ACT) outside the box, as they say.

I went to work today, and am just taking a quick break to blog a bit. It is a slow re-entry, getting myself both physically up to snuff and reconnecting emotionally to my work. What exactly will give me satisfaction these days? Getting a big donation for the Library surely would, but last night, as I figured out how to repair the toy cats scratched glass eyes, I found that my success (black sharpie followed by application of a clear coat of nail protector) gave me great satisfaction. Has it come to this? Am I truly getting to the state of stay at home Mom, where going to the park and fixing fish sticks for supper is enough?
Some days, yes. Mostly no. Yesterday, I met with someone who wants me to help her re-write her web content. I critiqued her text and her video (which will be part of the overall site content). It was as close to consulting again as I have come in a year plus and *it felt good*. Very good. I still miss that kind of creative work. I do.

When I get creative here, strategically or otherwise, it feels like a dream state, the process is slow, the prospects are lacking and I don't feel successful here yet, other than in creating relationships. All good, but that is not why they are paying me. I need to figure out how to make this work, work well and work soon.

Enough, I must give up this writing for a series of email notes to donors.

Which is, after all, why I am here today.

Saturday, May 05, 2007

Centrifugal Force

What is it about some kids, that whirling around and around on playground equipment makes them so happy? Today, a grey-ish, wet day, we went to the Strawberry Festival (doesn't that conjure up a bright, sunny day?) which is a benefit for Central Park School, a charter elementary school around here that we almost sent Sofie to.

It was held in a play area with great equipment, so we spent nearly the first 45 minutes of the drizzling rainy time with Sofie spinning herself into sheer abandonment. I got dizzy watching her. I finally dragged her to play on some of the other activities, like the bouncy jumper thing and an obstacle course. She actually loved the obstacle course, except the last part, where she had to roll a tire through a path. Her hands got filthy, and Ms. Priss got all in a tizzy about it.

Hands finally clean, we explored other things, they had a great treat, a lemon with a peppermint stick in it (hole drilled or cut into the lemon). All the kids and many adults were running around sucking on these things, you have to taste it to know it was pretty good, it does sound odd. I heard that by 3 PM they had sold 500 of them! In the drizzle.

We (OK, I) had a strawberry shortcake thing, and Sofie ate a hot dog with cheese sauce while spinning herself once again on one of the pieces of play equipment. I just don't get it, but it explains why she loves those darn teacups at Disney.

We stayed about three hours, then I had pretty much had it. I was tired. We went home to chill for a bit, I fell asleep during "The Invasion of the Tinysaurasuses" and Jamie picked her up around six PM. I was going to attend a choral concert, but pooped out, so watching a movie (a long one, so I took this break to write).

Tomorrow, I have pretty much the day off from child, so I have a brunch meeting with a friend (part work, part brunch), then I plan to do a few errands and get the nails done. Ah, I love grown up time. Or time to myself, for that matter. I started getting the Sunday NY Times again and perhaps I will actually read it this week. Last week was a total bust on that front, since I had Sofie. Ah well, it is a short term experiment, I haven't subscribed to the NY Times since Sofie came home (well, about three weeks after, when the pile of unopened newspapers gave me a broad hint of life changing in this arena). I crave the NY Times, I really do. And I feel a bit more intellectually stimulated than I do reading Scooby Doo.

Working on Monday after I get my blood drawn, then treatment again on Tuesday. Those treatment days come quickly, it seems, the week off goes fast. I am a bit anxious, this combo treatment is the one that sent me over the edge in terms of side effects last time, but I hope the new drugs do their thing.

Wednesday, May 02, 2007

Freckles Found!!

Just in case anyone else was living in a state of anxiety over the missing cheetah (actually a leopard, but not to Sofie), Freckles was found today by Ms. Sander's kindergarten class, and cleaned up a bit, and returned to Sofie.

Last night I created posters, complete with color image (from an e-Bay posting) of Freckles. With LOST as the title. Sofie posted them in the morning today at school.

She is busy planning a celebration party with the other cats, all of whom are thrilled to have Freckles home safe and sound. And not too worse for her ordeal, although her glass eyes are a bit scratched by the sand. I think that a coat of clear nail polish might help, a kind of cosmetic surgery for the Beanie Baby set.

The lessons learned from this experience, for me, are that sometimes, you simply have to let the sadness be and know that it is part of her emotional growing up. I cannot protect her from all the pain she will encounter in life. So this almost loss and her pure grieving was part of my learning curve too.

And for Sofie, she needs to learn that some kids will be bullies and do these sorts of rude things, but that she can confront the perp (once we figure out who it was) and tell them that they really made her sad. Sofie is learning to express herself more clearly on emotional issues or things that make her angry or sad. Mostly she expresses them to me, but she is also learning how to stand up for herself. A good life lesson, indeed.

Tuesday, May 01, 2007

Almost Like Summer

Today was a glorious, but almost hot day. It reached 89 or 90 degrees! But not that humid, disgusting summer 90, a spring version that was actually pretty wonderful. Skies blue and clear, the pollen issues of last month resolving somewhat, a very lovely day. Yesterday too. We ate outside yesterday, picnic style on the deck. Worked well, except that Sofie dropped her fork down between the decking and it is lost forever in the space below. Oh well, what is one fork?

This week is the "off" week from treatment and I feel good. Better than good, actually. I am not queasy, not too tired, and my blood levels post the last treatment a week ago did not sink too low. I am feeling lucky that the meds are doing their thing and working and that I am not a mess like I was the previous treatment. That was after the combination of the chemo drugs, so I am a tiny bit anxious about next week's treatment with that combo again, but one step at a time.

I went to the office today and more or less had a "normal" day, a meeting, lots of email and some writing. I don't feel up to speed there at all yet, but if I go in sometimes, it does help to reconnect me.

If all goes on schedule, I am halfway done with this treatment series and will complete it the last week of June. I don't really know if the side effects will be cumulative like last time. I hope not, but I just don't know. I guess I could ask that next clinic visit.

Next week they will do the CA-125 again, they do it the beginning of each "cycle" or two treatment period. I hope it has dropped again. I feel like the lesion area is less prominent, and it no longer hurts, so I take that as a good sign. But the lab values seem to dictate the direction of all treatment and the "prognosis" so I will keep my fingers crossed. As if that really helps.

Sofie had a sad afternoon today, her favorite Beanie Baby (Freckles the Leopard) was "taken by a big kid" and evidently buried in the sandbox. A search and rescue team tried to find her, but to no avail. Sofie and I went out there again when I picked her up, but it was still 89 degrees and I was in work clothes, sweating profusely. I finally gave up and took her home so I could get out of the work clothes, since I was so hot.

She is truly upset about this, cried herself to sleep. Nothing I could do would comfort her. I am making signs for school tomorrow, hopefully Freckles will turn up, a bit sandy, but none the worse for wear. Unless it rains tonight, which might happen.

Having your child be inconsolable is a pretty sad experience for a parent. I tried hugs, rubbing her belly (this helps her sleep, usually) and being reassuring, but I failed to help her feel better. I guess she needs to experience these sad feelings. Hopefully it will turn out fine tomorrow.

The temperatures are supposed to drop a lot by Thursday. It is still Spring, after all. I love this time of the year, when the trees are all full and lush and green and the days are pleasantly warm. I am happily back in slides and open toe shoes, showing off my illicit pedicure. I am not exactly supposed to be going for manicures and pedicures during chemo, but I have my standards, and I simply cannot give this up. I play safe, with my own sanitized implements, and take a certain amount of risk (for me, anyway) but to give them up would be detrimental to my mental health, so I continue to take that limited risk. And have nice toes. It's important to me.

I find myself in this weird space when I am feeling good. I "forget" about the cancer for a bit. And I feel guilty about not going to work, about all sorts of things. As if I could make the cancer actually leave my body or my life. But some days, it is nice to just "be" and not be the cancer patient or the sick person. So much of my day is focused on pills, meds, feeling OK, not feeling too tired, or napping when I do, etc. So good days, like today, are a blessing. But, being Jewish, one that causes a bit of push-pull kinds of feelings.

A week from Thursday is the benefit for me in SF. People have already been more than generous and I am overwhelmed. I intend to be quite frugal with the fund, using it for the specific purposes intended, and using it slowly, so that it will be there, for the future, as I need it. This cancer thing is likely not going away totally, even if this treatment round is successful. Like Elizabeth Edwards, this is going to be for the long haul. But if she can campaign in style, I should be able to do my life too, it is far less taxing than traveling all over the country and being with crowds of people on a regular basis. Not to mention having not one, but two small kids. (OK, and probably a nanny or two).