Tuesday, December 19, 2006
Monday, red/white and blue day
Tuesday, mismatched shoe day (she wore two different rainboots)
Wednesday, Wacky Wear Day (she wore shorts on top of her pants and shirts layered)
Thursday, Team Jersey Day (wearing the orange shirt of the Dutch Futbol Team from the World Cup, betcha that was classy for a first grader!)
Friday, School T-shirt day concluded with the students vs. the teachers basketball game.
She had practiced all week. Never mind that she is wearing the wrong shoes, she has all the right moves and got a sports injury (her first) to boot! Recored in the photos.
Jamie was able to actually go and watch, I was doing my last day at work before having the gallbladder surgery yesterday, so these are Jamie’s photos. Sometimes I really miss these once in a lifetime mother moments.
Enjoy. She is not that good at making shots yet, but she is very enthusiastic. The kids won, by the way. Yeah, right. And the elves brought some of her gifts to Durham early since Santa knew she was traveling. It is lovely to believe in all that.
For more on her Santa experience, read Jamie's blog entry:
I never had a gallbladder “issue” until after the chemo, when I experienced a big flare up in early October. Wanting nothing to do with doctors of any sort, I tried to will it away. No luck. I was sent for the requisite ultrasound and told that although it was not “acute” I had best see a surgeon. Still in fierce denial, I saw two, hoping that one might say that if I changed my diet a bit, it would go away. No such luck. Both advised surgery sooner rather than later. After a post Thanksgiving flare up, I relented.
My surgeon is a busy guy so it was a scheduling thing for him. The best I could get was yesterday. So my dear and faithful friend Betty picked me up at 5:15 and we were there well ahead of my 6 am call.
After cancer surgery and the neck thing a bunch of years ago, the gallbladder surgery seemed like a big whoop. Except the anesthesiologist had to go over all the risks of surgery and anesthesia, including “stroke, heart failure and death”. I know it is his job, but until then, I was hardly even anxious. Mostly I was concerned that I be able to get on the damn plane on Thursday. I had made my reservations (with miles!) eight months ago, and nothing was keeping me from this trip.
Long story short, I was home by 1 pm, it truly is amazing how the human body, not to mention the medical system, works. With some vicodin to offset the soreness, I took a looong nap. Then was awake for a short visit from Sofie at the end of her day, so Jamie could get my prescription to fill it. The pharmacists must think we are some kind of weird family, between us both needing chemo related drugs and vast quantities of pain killers in a short amount of time.
I had rented a movie I had already seen so that I would not have to work too hard to enjoy it…I popped in The Devil Wears Prada at about 7:30 so I could stay awake long enough that I would not wake up at 3 am wide awake from sleeping too early in the night.
It worked, I fell asleep about 9:45 and slept nearly 11 hours. Kind of like two or three nights in my sordid sleepless past!
Today, I am sore but walking, talking and emailing. I have to go back to packing shortly as that was the goal for the day.
I am not usually one for New Year’s resolutions, but I think this time I will resolve *not* to have any surgeries of any sort in 2007. That seems reasonable!
Happy holidays to all. I tried to get out a bunch of cards, but if I missed you this year, please know it was likely due to the craziness of being interrupted by the surgery and the getting ready for the surgery. And consider yourself greeted!
Sunday, December 10, 2006
The week they put up their lights on the trees outside, the interogation began: "mom, why don't we have lights? Why only candles on Hanukkah? Grandma in California has a tree, why don't we have a tree? ". That sort of thing.
I grew up with Christmas trees inside, but never had the outside light experience. Maybe that was even too much for my mom (culturally Jewish, if not participating). It was always strange to know I was Jewish, but we had a tree and "celebrated" Chistmas. Here we have been attending the Eno River Unitarian Universalist Fellowship (ERUUF for short), and mostly I feel very positive about it. Both the "old minister" (Mary, the assistant minister) and the newly installed minister are terrific and I feel a sense of peace whenever I enter the sanctuary. But I always feel a bit like a fish out of water, too. Because as generalist as they try to be, and as accepting of all people and all faiths as I know they are, it is still referred to as a "church" by many and feels, well, not Jewish. That is not a criticism, it is just a statement of fact.
So when the holidays roll around (the serious fall ones or this time of year, for Hanukkah), I try to immerse Sofie in all things Jewish. We have a stack of books about Hanukkah and lighting candles and we have played several rounds of driedel, but this year, she started asking me "why couldn't we have lights outside, since although she was Jewish, she was also Unitarian". I finally decided that lights, if they were that important to her, we not gong to destroy her or my sense of identity, not really. Then the tasteful side of me wanted to encourage her to do all white lights ("boring") or white and blue (a gesture, however lame, to Hanukkah). Also rejected, she wanted colors.
So we went off to Target, my source for all things, and I was befuddled at the choices! Strands ranging from a few feet to many yards, twinkle type or not, indoor for sure or indoor/outdoor. And how exactly was I to find the extension cord that would run all the way to the side of the house where the only (known) outlet was?
After many questions posed and answered by the distracted and overwhelmed looking sales associate at Target, I made my choices and we left. And went home to attempt to decorate the house (still striving for tasteful). We have two little evergreen type trees that our friend Beth used to stage her house a few months ago, then gave to us. Perfect for my first foray into holiday lighting!
A bit later, as she plugged in the lights, she just glowed. These are her contribution to our house, her responsibility to turn on and off in the morning. And she can look out from her bedroom window at nightime and see them. All in all, the light in her eyes was more significant to me, but I got it.
The lights are part of her experience. And now they are part of mine. On Friday, I am taking our Menorrah to her classroom with another mom and explaining Hanukkah to the first through third graders, complete with some jelly donuts and driedels to play (and gelt, of course). Me, the girl from Queens who did not light a menorrah until I was in my forties. And Sofie and I are practising, so she can say the prayer with me.
We are kind of making it up as we go along. Some nights we join hands and say a little blessing before we eat. This is something our friend Paul did when he was with us in the bay area, and I like to do with her sometimes. Tonight, visiting new friends (from ERUUF) and having a spontaneous supper with them, Sofie suggested we say a blessing. And she did! I was totally charmed and also aware that she is beginning to develop her own sense of the sacred. And she is only six.
The spirit of the holidays, all of them, is everywhere. You just have to look.
Saturday, December 02, 2006
Speaking of starting early! I got her camp applications for summer 2007 in the mail and another via email today. Hard to plan for June, July and August on the 2nd of December, but if you snooze, you lose. And she for certain wants to go to Camp Riverlea again, she loved that the most last year.
Sofie's pigtail hair is a great way to avoid the hairbrushing it takes to untangle the knots. The surface hair is smooth but underneath, it could be a total bird's nest. Poor baby, it does seem to hurt to brush it all out, but we routinely go through this torture on an every other day basis at least. I told her it happened to me when I was a little girl. That seems in hindsight to be one of those cruel mom things, as if doing it is justified by having had it done to me. The things that escape my mouth sometimes!
This was taken when I was at the hair buzzing/wig place, it is Sofie's official babushka'ed shot!
Friday, December 01, 2006
But the Grove is thousands of miles away, and so I let the car headlights be my candles tonight. The memories came flooding back, sweet, painful, sad. Powerful. My life these days has very little connection to the life I had in the HIV community for over twenty years. But today, something much bigger than the day to day schedule took over, and I was able to stop, to meditate on the lessons learned, the friends lost and those still living with HIV.
My life has changed so much because of HIV. I know without any doubt, that I was better able to deal with my own cancer because of so many of the people I met along the way, doing battle with an illness for which cure was not an option.
Today, I had to schedule gallbladder surgery for a few weeks from today. I did it with all the fanfare of making an appointment to get my teeth cleaned. Life has certainly shown me some perspective. And it started a long time ago, in the beginning of the epidemic, in my thirties, when I was not supposed to be losing my friends. I grew up with HIV in some ways, and I know I live my life differently because of it.Tofeel like I am supposed to be somewhere. This feeling was with me, vaguely, from the time I woke up, all day, and continued as I left my office late this evening (well, later than usual) and walked to my parking deck. The lights from the cars under the bridge to the deck reminded me, suddenly, of candles. And I started to remember so many of the bright lights in my life, now gone.
Candles have lots of associations, from birthdays to Hanukkah, but on this day, the thing I remembered the most was the marches. The AIDS vigils, those candles flickering, struggling against the fog and wind of chilly San Francicsco nights. And the sense of solidarity standing among strangers and friends, silently, remembering, praying, crying, wanting.
I know there were World AIDS Day things happening on campus at UNC today, but I had things to do and well, that is just not a part of my day to day life anymore. It was for over two decades, so the lack or loss of it still feels odd. Like I have a dual sense of being here and being at the National AIDS Memorial Grove or somewhere else, producing an event or doing something in memory of all the friends who died. And in celebration of those still living.
So tonight, instead of the flickering candles, the lights around me had to do. I meditated on those I love, still living with HIV. And those I don't even know, around the world, dying from a disease that should have been fixed by now. I listened to W today at the White House "commemoration" of World AIDS Day, and once again, he just sounded like an idiot. He should not be allowed to speak on occassions like this, his lack of any grasp of the real issues, the scope of the world pandemic make anything he attempts to utter sound trivial and stupid. And it is anything but.
Sunday, November 26, 2006
Alan Lessik (in his famous babushka, the one that started it all)
Kimo, looking none too happy to be so shorn and babushka'ed.
Eileen's famous "kinda short" haircut of solidarity.
Lisa's "Brooklyn Babushka'ed look.
The girl posse as we call ourselves, was with me for the whole journey, via e-mails and visits when could. This baldy head shot is from June 2006. From left to right, around me, are Pam, Brenda and Lisa. Eileen and Pat were our hosts that evening. Seems a long time ago now! Obviously, I should have worked on a fake tan for that white head.
I will attempt to post some more later, must go cook now!
I wanted to share a few photos of the girl, since she is getting older and taller by the moment. She is still not showing any of that toothy stuff of the first and second grade. But any time now, I bet!
Sofie painted as a tiger, one of her favorite animals. This one was done by a professional, not her mom! This is from a few months back, in spring.
I am making mostly “comfort food”, chicken pot pie, pumpkin bread, veggie chili and cornbread. Food that feeds the soul. I expected it to be a cold, damp day when I planned the menu, as Thanksgiving was. Instead, it is brilliant and sunny, about 70 degrees. But perhaps by the end of the day, the warm food, hot cider and candles will seem appropriate.
I need to do these things in this house, to try to work out the things that still make it feel not quite like home. The house itself is looking good, but I still find myself missing my “old” house, or some of those features, most specifically: the storage space and the fireplace! But this is our house now, and it does mostly work for us. In a few years, I imagine that Sofie will need more space, either a larger bedroom so she can have her own desk or some other space in the downstairs, carved out for her use. The large “playroom” space here is very underutilized. I keep imagining that I might have one of those home show people from HGTV come and tell me what to do to make it all work better. You would think I would know, since I have watched enough of those shows. My big fantasy is that I have the folks from Mission Organization, Design on a Dime, Curb Appeal and who knows what else all meet, fix it all and leave me with my Barbie Dream house. Oh well, I should be happy that we have a house and work from there.
I still find myself keeping stuff I don’t use much or need. I use my alone time to organize my closets and things. Other people would go out, shop, etc. Not me, not this year. This is the year of the nesting. Finally making peace with where I am, the next step is to make the where work better!
The weekend went by too fast. I had Sofie until Friday PM, after we went to a movie “Happy Feet” she went to stay with Jamie for two days, until later this afternoon. I also have a new, or rather returned family member: we are trying to reunite Boone, the boy cat, with his sister Gracie. The poor cats have been way too traumatized by all the moves, separations, etc. So far, Boone has been hiding non-stop, but I am hopeful that in a few days, he will realize he is “home” again, and safe. That is truly what it is all about, not the decorating.
Oh, a note, before I close, on the hair, since many have asked. It is growing back, in kind of a silver mixed with the old brown. The texture right now, with the very short hair, is kind of pettable, like a cat! About three weeks ago, I went to work wearing the wig. I got hot (it was one of those nearly 80 degree days) and I took off the wig for a bit to cool down. And never put it back on. I realized that day, I was done, my short hair is a symbol of the survival and besides, it looks kind of cool. So now, with my eyebrows back, and my very short hair, shorter even than the buzzed hair, I am back in the world, wigless and proud! And sometimes, cold. I was sorry not to see the hair come back in thick (dark) curls, but it remains to be seen how thick it will actually be and how silver. I might just not color it again, but don't quote me on that. I have had nothing but positive feedback and that has stroked my ego, but also reminded me that I am strong, and I did survive this whole period really well.
I am in denial, despite the holiday ads, the relentless profusion of holiday foods in the supermarket, and the fact that I have already shipped holiday gifts to my nieces and nephews. I cannot believe that tomorrow is Thanksgiving. Wasn’t it just a month or so ago that the first cool crisp fall air made me smile? Mid-October (the 20th to the 22nd), we traveled to Western NC (near Asheville) to attend the Leaf Festival (on Saturday) and watch the leaves turn their brilliant colors on what seemed liked thousands of trees?
Now, not only does it feel more like winter is truly approaching, but tomorrow, we are going to be celebrating Thanksgiving. The temperatures are so variable, from very chilly when leaving for school in the early am to warming into the 70’s some days. Very odd. But a few heavy duty rainstorms have taken most of the leaves off the trees for the season. So now I am more comfortable about getting the leaves blown off the lawn (or whatever the heck you call all this land) and bagged. It seems a weird thing to do month to month leading up to this time, as they simply fall down again. What exactly is the point of blowing them week to week? Still one of those cultural things that baffles this ex-Californian.
This season, I am truly celebrating, in a most profound way, the year that has been, and still is, 2006. What a path to travel in a short span of less than a year.
Last year about this time, I truly doubted that I would be in NC to celebrate anything at all this time of the year. I was sure that we would be back in CA, where our spirits and hearts felt at home. But that was not what the year had in store for me.
In March, with one ultrasound, my world was turned around. The diagnosis of cancer is a scary one and although I was blessed to have a “good” diagnosis, caught early and treated aggressively, it was still a life-awakening event. And so in March, the path veered quite a bit from the plan to pack it all up and move “back” and slowly I realized that I was planting my roots in Southern soil. Granted, at this advanced age, the rooting might take a longer time, and perhaps there will still be doubts from time to time, but the rules of the game changed last March. And I cannot ask for a “do-over”.
When you have cancer, you become, in this crazy world of private insurance, a much higher risk. So if I were to be self-employed again, I would be too expensive to insure myself! At first, I felt that this was like a bad hand of cards I had been dealt. But now, in retrospect, I see it differently. Perhaps the universe was simply telling me to just let it be, to stop trying to un-do the move, the whole east coast thing, and to just settle in or down, or something. Whatever it was, I don’t feel like I am fighting anymore.
This year, tomorrow, Sofie and I will join friends here and celebrate that we have relearned what “family” means, that I have learned to trust again, in a way I was sure I would not, could not do, that I have begun to feel settled in a place that seemed an impossible fit a year ago, and that I have taken in the kindness, caring and generosity of many, which I hope has made me a better person. I had to allow that to happen, to let myself receive when I needed to. It took the cancer diagnosis and treatment to make that happen, but whatever the reason, I am profoundly grateful for little things, and for the big thing, that I am still alive, feeling almost like myself again, that I have eyebrows and hair, and that Sofie made it through this period apparently unharmed by all the fears, changes in routine and visible signs that I was sick. And she entered the first grade just like any other little six year old.
I want to take this time to thank all of you, each of you who wrote encouraging emails, made phone calls, brought me to chemo, gave me a massage, took Sofie for a few hours, stayed with me for a week at a time (thank you Sue Hirshon from Los Angeles and Carrie Helser from San Francisco), and generally entertained me through the five months of treatment and discomfort. I will always remember this time, and mostly in a very positive way, as being, well, life changing and very enlightening.
As you gather tomorrow to celebrate (or in Brenda’s case, board a plane to run a marathon in Italy!!!) please take a moment during your day to feel deeply appreciated and loved. I plan to send out that energy all day tomorrow, non-stop, so that everyone who is reading this might feel it just a little bit. You are all part of my circle, my safety net in life, and for your presence there, I am most grateful.
Sunday, October 15, 2006
Due to Technical Difficulties
OK, I admit it, I am still a techno-dorkasaurus, and cannot do simple 21st century stuff without coaching. SoJamie had to write step by step instructions, and I am just getting up the courage to finally post this long entry. I am so lame.
Today is Saturday, I am child free, the day is overcast and perfect for sitting by a fire with a great book. However, I am without a fireplace, and have tons of things to do, so filing email had to suffice for a warm cozy environment with great literature. Last week, it was 85 degrees several days, totally obliterating my argument with Ms. Sofie about why we need to wear socks this time of the year. But now it is more in the 50-60 range, feeling quite “fallish”.
Tonight, I am attending this evening a small gathering for Equality NC, a political organization I support with a monthly pledge. I have to admit, my real reason for attending is that the two men who are hosting it live in the neighborhood, proudly displaying equally sized flags for the US and HRC on their porch. And their house is one I pass by every evening on the way home, and it always looks like the HGTV crew just left. I have been wanting to peek inside for a year or more, so this is my (totally legit) excuse for getting in there. I am shameless, I know it. But like you have heard me say before, I am missing my gay male friends from CA and seeking some new ones. Who knows, they could be candidates, and just not know it yet.
Life is busy these days, I have a speaker from Google scheduled on October 26th (speaking hosted by our Health Sciences Library, see http://www.hsl.unc.edu/google for more details. I have already gotten kudos from folks here, just for getting it this far. So that is nice.
October 4, 2006
She’s Baaaaack (The View Eight Weeks Later)
I have been not doing as much updating or emailing, more catching up on all the months of half baked, half completed work stuff. My chemo brain was quite real, more so than I would have admitted! Ignorance was bliss.
I feel so grateful to have my energy and work focus back, and to have such supportive, gracious and giving colleagues. I am finding myself fiercely loyal to my library these days, and tiny step by tiny step trying to get more folks to support us.
Sofie is doing ok with 1st grade, behaviorally better, still behind in reading, writing. Math is ok and she appears to love science. But still bossy and stubborn. Working on it gently with her IEP team, we all met last Thursday to discuss her progress. I have heard that she is "hardheaded" but also compassionate, which I have seen demonstrated to me over and over. It is tough to set limits for this child, she tests and tests and tests more. They all seem to be charmed by her, despite her challenges. She is in a reading program and reads four to eight short (and very boring) books to me each night, then I read to her. She has to pick the ones I read, which sometimes (often) means the same one is in rotation for oh, three weeks until I just refuse to read it again.
A few nights ago, I had sitter so I could go to volunteer meeting (ka-ching, another $35 to volunteer!). I let her stay up for me to kiss her goodnight and she whined about reading so I said, OK, two short books. But she pleaded for one she loves, which (kiddie pages, but still) is 42 pages long! So it was another dramatic reading of “Snake Camp”.
Interestingly, one of her teachers and I were discussing that she is not really doing the hanging out with the girls thing that often develops between 6-8 years in girls. I thought this might have a bit to do with the fact that Sofie could care less about anything Princess or Barbie (she detests all things Barbie). But she does love snakes, Scooby Doo and getting dirty. So she is playing with boys some. But boys also play their way, not letting her be her bossy self as much, so sometimes, she seems perfectly happy playing solo.
She also does not watch much TV, never on school nights and not so much in general. I know I am stunting her peer acceptance abilities just a bit, but I think she will be fine. Waldorf School kids are not allowed *any* screen time, so I hear, and they live to adulthood. Maybe I can save her now from a life of reality TV.
But I look at her and still melt sometimes. The other day, we had an argument over what to wear to school on picture day. She usually doesn’t even care, but this day, picked out her red t shirt and ratty blue shorts. I picked out a lovely bright colored dress. I insisted she put it on. She countered. I persisted, finally ending the argument with “because Mommy is paying for these pictures and I get to choose”. How pathetic am I anyway? But she looked cute and hopefully did not pose with her famous “cheesy grin” for these shots.
Anyway, it was a lovely 82 last week, with a soft breeze, not humid (yay!!!) and I love that. I am 8 weeks post the last treatment, my hair is soft and fuzzy and my eyebrows are about 75% back. So not too bad. I love fall and spring here. It is the summer that I cannot stand and I seriously doubt I will learn to love that. Tolerate is more like it. Winters have been mild to date, but this one is expected to be much more cold, perhaps more snowy too. So we will see.
Life happens. On the way home from work Tuesday, my car's battery light and brake light went on, as I was chatting on the cell phone. Brenda said "if I were you, I would stop at the car place" Subaru was literally a block or two ahead, so I followed her advice, pulling in their driveway as my car died! And less than an hour later, and $400 out of the bank, I had a new alternator, some sort of belt, a recharged battery and was on my way home! And I was just cool as a cucumber during the whole thing. I have gotten perspective, I know that. A car problem pales when compared to cancer.
I had called a friend to get Sofie from school and that worked just fine, that family took her out to dinner with them, and I joined them a bit later. My kid eats out so much more than I ever did as a six year old. She has her favorite places. Me too, but they don’t involve crayons.
So, everything in perspective! It all works out.
Did I mention I am now involved with the PTA? I cannot believe it as I write this, but I am. I write little emails and make calls and generally try to coordinate the room parents at the school. It seems like a nice low key way to be involved now, and later I can see if I want to do more.
Wishing you all well. Sofie and I will be in the bay area (Palo Alto and in Oakland) December 21 (arrival) and departing on January 2. I hope to see many of you then. Keep writing those emails, it is great to still feel a connection to the Bay Area even though I live here now. And I think I really do!
September 26, 2006
Philosophy of What Is Real
Two friends are celebrating their 18th anniversary this month. A happier one than the September 11th anniversary we observed just a few short weeks ago. They are not married. They aren’t allowed to be. Not yet. Not here, anyway.
I want marriage to be legal and I believe it will be, someday, hopefully in this lifetime of mine. But I also have become rather philosophical about the why of marriage, for hetero or homo sexual folks. Some musings, then brought on by reading some writings of others, especially Randy Allgaier, who writes knowingly about the politics and policies of it all.
Marriage is a legal contract, surrounded by romance, a big party and gifts. It is at once a protection and a complex legal arrangement with its roots in economics, not passion. Probably I am cynical, I don’t have an 18 year partnership that I want to protect and honor. But I feel like the relationships I have seen work, in our community, have more going for them than mere economics. We have a different, more conscious commitment and understanding. Because we don’t have an easy button and we don’t do it with Elvis to make it all “real”.
The book the Velveteen Rabbit (where the concept of real is somewhat made allegorical to the process of dying, I guess, it used to be quoted a lot at memorials), that book has always been a reminder to me about what makes things “real”. When the Britney’s of the world marry and divorce before the week is out, when even Jennifer and Brad’s Hollywood story is disrupted, when people cheat and pretend and do all sorts of things under the auspices of “marriage”, that is when I truly wonder who these right wingers should be paying attention to. Real is gritty, real is day to day, with trash and PTA meetings and homework and cleaning the litter box and commuting to work and organizing schedules. Real is cancer.
I was strangely moved for a moment when I read that Brad Pitt (who I really could care less about most days) said he would not marry Angelina Jolie until gay men and lesbians could marry. I wondered what the reaction might be if everyone who was heterosexual did that. Would it make enough of a statement for those who are so hell bent on stopping gay men from registering at Gumps and Crate and Barrel and taking their vows, after a long, for example, perhaps, 18 year long, courtship, would they get it? Probably not. But these old men will die off soon and I truly believe many of those who are coming up behind them will not think this way. Or at least will be more open minded, with a live and let live kind of philosophy.
So we will see. I look or notice little signs of change all the time. In some magazine today, Real Simple, I think, they referred to spouses as partners, not husbands or wives. Little subtle things like that. Language tells us a lot and language is changing.
I feel a bit like a lesbian William Safire.
September 21, 2006
A Kind of Re-cap
Today, six weeks after completing my last treatment, I am feeling almost like myself again, only still without much hair. My energy level is about 85% most days, at least in the mornings and afternoons, and I look forward to coming into the Library every day now. The eyebrows are slowing coming back. Combine this with the onset of the fall weather, and I am one happy woman.
Not to sugar-coat the whole thing, I would not recommend chemo unless it is absolutely recommended. But I feel blessed that this process was manageable. I still have a lot of neuropathy in my feet and that is something I may have to learn to live with. And there are some side effects of the surgery itself that still pose challenges, but nothing I cannot learn to accommodate to. Even the hot flashes. I guess these would have been inevitable, but their sudden onset and fury still takes some getting used to.
I tend to try to stay positive and sometimes push myself too hard. I am trying to learn from this recent experience, and change my ways. It was a bit of a revelation to find out how restorative sleep can be, so I continue to try to get more rest than I did previously.
My doctors tell me I am right on track, that the last 10-15% of my recovery will be slower, but that it will happen. Until then, I am continuing with the various adjunct therapies that helped me get through all this, like the acupuncture. And I still seem to be spending more time at doctor appointments, although hopefully in a month this will lessen. There will be follow up visits every three months after October and then, in a year, even those will be less frequent.
Everyone at the Library has been beyond compassionate and thoughtful. I feel honored to work with all of my colleagues. And I am working…I have been busy digging out of weeks and months of half completed projects. That thing about chemo brain is no joke. I
keep finding things I started, but never finished, buried in the most inappropriate places on my desk. But the world did not collapse in my absence.
Today at work, I was writing like crazy. We are having a huge success with the plans for our Google speaker, five weeks away and we have over 300 registered already. Out of the ballpark.
I am feeling so much better, every week I feel improved. About 85 percent normal, I would say. Jamie has done one week of radiation as of today, four to go. Ten minutes each day but it will be cumulative feeling.
Then she has another implanted radiation, then a short break and probably chemo for six sessions, over 18 weeks, like I had. She will be in treatment until spring for sure if that happens.
She is trying to stay positive too. But is different than me, so has her own process. I on the other hand, feel like I am "done" and want to get on to the business of growing my hair, getting the rest of my energy back, etc. I still have pretty significant neuropathy in my feet, but that may be forever, so I am trying to continue acupuncture, but just adjusting (for example, a pair of shoes yesterday felt very uncomfortable, so they are likely to be retired).
It is funny, just after the calendar passed Labor Day, the weather seemed to get the memo and started to feel “fallish”. Not cold, but that air change quality that makes you know that fall is coming. Yes, fall is in the air, and I feel like I have (most) my life back.
August 30, 2006
My nephew is 11 today, where did the past ten years since he was only one go?
How come he looks so much older and I feel about the same as say, six years ago? Thoughts to ponder.
Today I got an email with a very real looking computer message that looked like the message you always get when you want to delete something. It said:
Confirm File Delete
Are you sure you want to delete 'the entire Bush administration' ?
If only it were that easy!!!August 25, 2006
Tiredness from the Inside Out
My tired is a combo of both, real physical tiredness and combined with not much real aerobic exercise, which I am trying to gradually modify with right now walking, then hopefully biking in fall, and that lack of connection to the world that crops up.
I am trying to re-energize my work and my engagement in it, I have truly coasted for several months now, but it is hard. I love my colleagues, really they are so great, and I would feel like I let a family member down if I left (even to leave within UNC) but I don't feel especially effective. Although I have revamped the annual giving, written the fall letter already and am working on the theme and the general content for the annual report (which I will then hand off for actual interviews and writing to my colleague). But that edge that HIV fund raising (or other kinds for that matter) had is not there.....
August 23, 2006
Where Do We Go From Here?
I am still struggling on defining the parenting parameters, especially since March. Having a life threatening disease scared the shit out of me, and it did make things more clear, and in a way, more simple for the short term at least. And, as I have written and said to Jamie and to others, she stepped in and offered to be there for Sofie in a meaningful and very supportive way just as soon as I was diagnosed. And she did not waiver on this.
Now, Jamie faces an even longer treatment, which will probably be twice as long and possibly twice as complex as mine was. Sofie will still want to see her and especially since we have gotten much more regular with the contact.
Jamie told me today that she felt I was I am upset with her for having cancer (or something to that effect). This is simply not what I feel. I do feel overwhelmed that I could not get completely recovered from my stuff before her journey started, but I don't get to control that and I certainly don't blame her. But yes, I have feelings about it. Overwhelm, the sense of not being able to truly move forward without the exhaustion that is still part of my daily life, and also a sadness for not having a chance to have a "normal" experience of us trying to be parents to Sofie.
See, I said parents. For a long time I was not ever going to use that word for you again. But Sofie has somewhat defined that part for herself. I don't want to argue with her or have to explain the legalities to her. So for her, Moms or parents is what we are.
But legally and to the world, this is the struggle. I still see myself as her parent (as in a single parent) for the total responsibility of her life. Economically, in terms of the big decisions, etc. That does not mean Jamie is excluded, but it is how I still feel. I have to know who I can count on and I am not feeling like a “co” yet. This is the area that is the most difficult.
I don't know what models to use to frame this. If I had been a single mom parenting her, and we were together a year or so, I would not consider Jamie her parent. She might see her, spend time with her, all that, but not as a parent. So our situation is different, unique perhaps, but still need a point of reference.
By extending parenting to Jamie here in Durham, I am essentially making a decision, which is more bonding each month, each year, to stay here. And if that is in Sofie’s best interests, then I will and I will try to make it a meaningful life for both of us. But when she asks to go back to live in CA (which she has done) or when I feel a sense of loss or just lost here, then it is harder to know and to accept my own choices sometimes.
I would like, ideally, to create some sort of family with the three of us and of course, extending to Jamie’s parents and her step mother. But again, few models for this.
We are not a couple, not that sort of family that we had intended when we began the adoption discussions a long time ago. It is not what I wanted for my child, any child. But I was always willing to be a single parent. I just never thought of that in the context of a community where I was not established, with a wide circle and net of support and my family.
So, I need to figure out how to do this. I know I can, but know somewhere inside me, that this will be a long and arduous journey.
August 22, 2006
As Sofie Sees It
Sofie wants to spend time with Jamie and with me – but I think Sofie is over me this week. I have been in preparing for return to school mode, which means being more strict with her on bedtime, getting ready in the am, etc. Not easy with that little one. My goal is to be out the door most days at 8. So I am on the road by 8:15. That takes getting up at 6 or slightly before. Sometimes when I hit snooze, instead of sleeping I plan the lunch for the day.
And she has a long day at her camp, she told me that last night, which is why she is not excited about school. No naps and a long day. Just means she has to be in bed and ready to sleep by 8:30. Not much day time together, not with that schedule. But full time working mom (sort of full time, if you don't count the early departures to get her, about 15 minutes each day) is what I am. But she misses her mom when the day is like that. I miss her too sometimes. I use the time driving home to let go of the day, breathe in some energy and morph into mom again. She will survive this, most kids do, but I kind of wish for those flexible days of consulting again.
August 19, 2006
I Feel Pretty – *not*
Here is something *not* to do when you are feeling like a cancerous blob. Take the “Real Age” test online. I was actually a few years older than my chronological age. I guess instant menopause and cancer will do that for a person. But, seriously. This was not a good idea.
August 17, 2006
What Not To Wear Alert
I looked through the digital photos from Sofie’s birthday bash today. Yeeech.
I am going through an “ugly” stage right now, so I want to edit all the pictures that have me in them and make it look like I was behind the camera the whole time.
And the wardrobe issue, in this hot, humid climate, is another story. Stacey and Clinton would be appalled. I have to have a mock “what not to wear” session with myself, and then figure out how to get some new stuff, so I look more professional in the fall/winter. I just give up this year on summer. Most days, I just want to curl up at home in capri pants and never venture out. I know I will overcome this, but the loss of eyebrows and lashes, coupled with the wincing I do when I walk, well, let’s just say this is not a pretty picture. Bad hair....hate it all.
Sometimes I worry that my sister (a die-hard what not to wear watcher) will have submitted my name to them and I am actually being stalked by Stacey and Clinton. There are some very comfy clothes, my security blankie clothes, that I will NOT throw out, not even for their $5,000. I will hide them. And I cannot wear pointy toe shoes anymore. Can anyone, really? My fantasy life surely does need improving, doesn’t it?
I was going to take time to actually see a movie in a theater, but I don't even know what movie to see. I feel sooo boring. I am watching the series Sports Night, on DVD. I never watched it when it was on TV, thought it actually was a sports show. I love it and I know I will miss it terribly when it is the last disc.
August 11, 2006
I was thinking about the people I have known for a long time, and just the way that I am known to people and them to me. I know that the next big “job” I have is to figure out how to make my life here real. It is beginning, as friendships deepened with the cancer, but still has a long way to go to feel rich and meaningful again. I want to at least try to create that, and to get myself healthier, overall, so I can be the mother my daughter deserves.
It is not her fault that I decided to become a mom at 50….but I feel it is my “duty” to try to be all the mom she deserves, including more active (I have to learn how to jump on that damn trampoline when I am stronger). And not to let the number in my age determine the way I am with her. I feel young (well, I used to pre cancer) inside, most of the time. Younger, at least!
I was thinking about the path I had to parenting. I was wondering about what if I had had the child I tried to conceive in 1994. That child would have turned 12 years old this past year. It is just in my head, not wanting it to be different, I love Sofie more than I could imagine loving another person, and she truly is my daughter, but I wondered, what would it have been like, if I had had that child I lost.
But it is time to get the six year old I have now, that vital, imaginative, bouncy, loveable little girl who takes my breath away. So I am going to take a deep breath, feel as energetic as possible, and go!!!!
Thursday, August 10, 2006
You might think my title would be more celebratory, as I have completed my full six rounds (sessions?) of chemotherapy as of this week. But to catch you up, I have to go backwards a few weeks.
As many of you know, Jamie has been invaluable in helping me get through the treatments by taking Sofie the week of the treatment so I could rest unencumbered by our child’s high energy needs! We visit during this time, but it means I can focus on sleeping and healing and not so much on bath time, packing lunches, etc.
But new developments here that have changed things around for us. About two weeks ago, Jamie went into the hospital and had surgery to remove her uterus. Amazingly, they found cancer. She is not yet 41. This has really shaken all of us up, she has a lot of healing to do from the surgery itself. Since her condo has three levels of stairs, she came from the hospital to my house for a week to recuperate. A bit bumpy at first, as we all adjusted. But I moved down to the guest room and was quite comfy. Jamie stayed in the first floor bedroom so there would be no stairs to navigate at all for at least a week.
They sent her home and a week later, took out the staples in her belly. Leaving an open wound! I did a bit of wound care, which was a bit overwhelming the first time, but now she is home and managing it as she heals.
She has not yet heard from the doctors what the exact treatment plan will be, but it is probably going to be radiation. They did not think (early in this process) that it would be chemo. I have no idea how vigorous radiation will be, but I know that it will also be tiring. But she gets to keep her hair and eyebrows with that type of treatment.
So, there we have the situation that comes on the heels of what should be a time of joy, the end of my treatment. Five months almost to the day that I found out I had cancer, I completed the last chemo treatment on Tuesday this week.
On day and night before I had my last chemo treatment, I was focused! Several nights before, I ended each evening by visualizing a lot of white light and healing energy. And watching a Netflix episode of Weeds, to get me ready for Season Two.
Tracey gave me one of her magical healing massages before she left on a short vacation. On Monday afternoon, I had an acupuncture treatment to work on controlling the post treatment nausea and the joint and bone aches I have been experiencing. The acupuncture has been pretty amazing at the nausea and pain control, it doesn’t make it completely disappear, but it is a lot better.
About 6 PM, Sofie and I went to the airport to pick up Carrie Helser who was arriving from San Francisco to help me out in this last treatment. The fatigue, as you might imagine, has been getting more pronounced. I barely make it past Sofie’s going to sleep at night. And I yawn, a lot.
I remember once, someone in a TV program saying their “get up and go had got up and went”. So it is for me.
So Tuesday we took Sofie to YMCA camp (she has finished her three weeks at Camp Riverlea, more of a nature camp, where she had a blast). Then headed out to Duke at 11 AM. Later than usual appointments, as the day had been switched to Tuesday so I had the energy over the past weekend for Sofie’s sixth birthday party. Whoa, when you get to Duke after 9 you can see how the schedule has gotten out of control. Overall, I was about two hours behind all day. But otherwise, once the appointment in the treatment unit started, I was fine. Chris, my lovely nurse, was wonderful. Nothing like the last visit which had been such a disaster! She was in a celebratory mood with me, for the final treatment.
Carrie and I had stopped at Whole Foods prior to getting to Duke, so we had a small cooler of wonderful gourmet treats for lunch, including sushi. Beats the heck out of hospital food. We played one game of Scrabble, I was pretty groggy and Carrie won that game! But we both had pretty crappy letters throughout.
It was over without fanfare at 6 PM. I wonder what I had expected to feel? Relief? Joy? Mostly I was just, well, tired. Picked up Sofie from Jamie’s house (our friend Delma just happened to stop by Jamie's and was able to drive and get her that afternoon). And then just moved slowly until bedtime.
I do feel a great sense of relief that the treatments are over. I don’t really have a clear idea of what happens next, the docs are not that forthcoming with the plans, unless you ask them directly. I had not seen my regular doctor anyway, so I did not ask much. I will continue to have blood work for a while, while they watch my levels go up to normal, hopefully soon. I have one more dose of Procrit to take to boost my red blood cells, then they will be on their own.
I will begin to feel better and more normal within two months, they tell me. I hope so. I almost have forgotten what it feels like to bounce out of bed in the morning and go the whole day and not feel like I want to collapse by dinnertime. I kind of missed this summer, but it was a hot one (still is) and for now, I am content to be mellow.
Sofie starts first grade in a few weeks, and we (and I do mean we) will have lots to do to keep up with that. She has been very resistant to writing or even doing her reading this summer, another reason I think year round school is truly a better option when available. But hopefully it will come back to her when she is in school. First grade means real homework, about 15 minutes or so a night. Getting that in with the playtime, bedtime routines and all that, will be a challenge, but we will get used to it.
My work has been very accommodating, but I am sure they are ready for me to get back to my full self, to try to follow through on things that have been “on hold” for lack of a better word. Fortunately, libraries don’t move at a rapid pace overall, but I do have things I need to get back to. This is the most challenging job in development I think I have ever had. The donors are just not there. So I will have to be even more creative as I move forward. It is even harder than in the earlier days of HIV when people were afraid or cautious of giving to HIV issues, because of the stigma.
Before I close this more or less somber piece, I have to share some fun stuff from Sofie’s birthday event. It was at a place called Pump It Up last Saturday. This place has a room filled with those inflatable bouncy things kids love. There were 17 or 18 kids there, plus the assorted parents. Sofie was thrilled that so many of her friends came. She was very excited to see Corey, evidently he is the “the boyfriend” she mentioned months back. But she (Sofie) has some competition for that little heartbreaker of a six year old boy. He sauntered (yes, sauntered!) into the party and said “Hey Sofie”. Another little girl, Sarah seems to also have a major thing for him. She got his attention and they played air hockey together. Sofie did not seem to notice, so perhaps she is over him! He is really cute, however, and seems to know his power over the six year old girl set.
Sofie loved her party and insisted I go down the big slide with her at least once. Once was about all I could manage, the one slide made me feel like I had been on the open seas for about two days, my equilibrium was not so good. She must have gone down that slide 50 times. At least.
Sofie also had directed her desires about her cake: Chocolate inside (cake and filling) and white icing with snakes on it. Costco does not quite do the snake motif (although with the Snakes on A Plane film, perhaps they should reconsider). Anyway, I applied the snakes for extra dazzle and Sofie was delighted. The kids ran themselves ragged for about an hour and 45 minutes, then we went into the party room to infuse them with more sugar (cake, juice bags and goody bags with candy and toys). Sofie sat on a big throne to open her gifts. The list I sent out with her invites worked! Not a Barbie in the batch. Lots of great art stuff, some toys, games and books and overall, she liked everything.
Finally, in that way life is so ironic, I have heard this week from three college friends. All of them have grown children either in or done with college. College! I on the other hand, spent a half hour on the internet this AM, trying to track down some sort of specialized composition book for first graders. Finally located it, (not in any of the stores I have been to) and ordered them online. Ridiculous. But they were on the list.
And so, now what? I am not quite sure, but you can bet I will keep on. And keep writing.
I am going to stop now, but also want to again say thank you from the bottom of my heart, to all my friends and family who have sent their love, best wishes and prayers during this time. Keep sending them, and if you could, send a little Jamie’s way as well.
Tuesday, July 18, 2006
But today that does not include me, I am still home, post last Friday’s treatment. They (the medical they) were right, the effects are cumulative and I simply don’t bounce back as fast. The great news is that I have only one more treatment to go! Which is good, because I am so over this. Not the hair loss or even the actual treatment, just the after effects. I am tired of being tired. I know I am not the first to voice that sentiment, but as you all know, being still is not my forte. And so all this resting and napping has gotten to be a bit of a nuisance, you know?
I should be productive in the house, but I am just kind of slugged out, so typing and emailing is about the level of activity today. Perhaps tomorrow, I will do better. Oh, yes, and I am in the process of sending out the invitations to Sofie’s sixth birthday. A bit later than I had hoped, but they will be out today, which is a tasteful almost three weeks in advance. Since this is not a $250 per plate black tie benefit, the typical four weeks and three days in advance might be gracefully waived. The elementary school set is much more forgiving about these things.
The big challenge is finding a nice way to communicate about the presents. None are “needed” of course, and she is in that awkward age of being between preschooler and teenager in the toy department. I went looking for things, ideas, at Toys R Us and was disappointed. She is completely not into “girls toys” (all pink and Bratz dolls and Barbies) except for those My Little Ponies and I personally think the stable is full there. But she is aware of every one she does not have and wants them all. Why, I cannot say.
But other than that, her interests are more in science things (like the butterfly habitat my Mom gave her) and cars and yes, snakes, still. She has eight or nine large stuffed ones, and we don’t need any more, but fortunately, she has two rooms that she can populate with her creatures. So snakes still rule. And art things or building things are always good, so I am making a tasteful list, with all sorts of ranges of prices, to let parents know when they ask. Otherwise, they might get a Barbie, unknowingly, and have to watch it get dropped to the floor in disgust. She hasn’t mastered that polite “oh, how nice” fake thank you yet. A good thing, I guess.
In order to make room for more things, I have begun to do stealth purges of little plastic items from her room and play space. Nothing too dramatic, but you would be amazed at how this stuff accumulates. So here is what I do, when I can: I pick up little items, sort them and take those that don’t seem to be in rotation much out of the mix, putting them in a plastic bag in the closet for three months. If she doesn’t ask about them for that time period, I feel it is safe to give them or toss them away. Same with clothes. She gets attached to things, even if they don’t fit, but if I simply move them out of the closet she seems to be more ok with that. I know that someday, when she is in therapy, she will be saying that she was nagged by constantly missing items in her room as a young child, and probably thought she was losing her mind.
It is partly my fault, I get so enamored of those little toys like the cars from the Pixar movie, and then set out to “collect” them (you don’t have to buy a meal, you can just get the toys) and then she gets into it, and I am going around from McDonalds to McDonalds seeking out the “Mater” truck. With no success, mind you.
I guess eventually I could sell them on e-Bay, but I know I won’t. I am such a wuss.
Who knew as a parent I would care so much about what backpack she had or the type and color of her raincoat? Really, I swear I wasn’t going to be that sort of Mom, but somehow I get into it, and I care. Too much!
The best gift she has received, a bit early, is a trampoline. Jamie found one for sale used, with the protective sides, to keep bouncing kids contained. Sofie loves it, and even when the temperature is hovering over 90 something, wants to bounce. And bounce. It is a good thing to exhaust her, however, and that gets her to sleep early. Also good, because camp is exhausting too. What a life, camp, bouncing, just all that fun. Six is the bomb.
Flashback to last month (the missing blog)
So, it was a month ago that we traveled to California for our visit. We left the Friday of her last day of school. What a week. I tried hard to pace myself, so my apologies to all of you that I did not see. I put quite a number of miles on the little rental car, something called a Cobalt. Which made me appreciate my solid Subaru wagon all the more! First and foremost, thanks to all of you who replied to my childcare request and my wild appreciation to Janice B for coming through in response to my Urgent Request for a Babysitter when Plan A and Plan B fell apart. Janice and I have known each other for many years, through Passport related agency work, I think, and Academy of Friends, perhaps. She reminded me how wonderful people in my life can be. Her response was a delightful surprise, but enabled me, on the first night in CA, to attend the GLAAD Media Awards with the handsome Mario Diaz, who was my host. What fun. My sister styled me (rejecting the outfit I had brought in favor of a more sophisticated look) and she lent me some things, including shoes, so I was properly attired. I was not so keen on Dee Dee (I am much too self conscious about that wig), but the look mostly worked. Which was good, because I got to meet Carson Kressley from Queer Eye and did not want to offend him by wearing a terrible outfit. He did not seem to notice what I was wearing, he was much more interested in my date, Mario! I stayed up past one AM, which was a first for me since the surgery in March.
I was excited to attend the event to immerse myself in all things gay! I am sorely lacking that gala event energy here in the Triangle. Not quite sure why, I imagine it is because my life is so far away from the HIV world and the LBGTQ world day to day. I am involved a bit with a women’s group (mostly lesbian, but they say women’s) here doing some fundraising for their fall event’s silent auction, but nothing like the bay area. I was actually feeling like I needed a “fix” of gay male energy, which the GLAAD event provided. But I needed to be surrounded by gay men and dressy lesbians, and it fit the bill, just perfectly. And I was good and did not even look at their auction items.
One highlight of the trip, at least for Sofie, was the trip with Naomi and her Mom Joanna, to the Jelly Belly Factory in Vacaville. Worth the long drive, the girls had fun, so did the grown ups. And Sofie and Naomi got to have a sleepover together and I did too, at the gracious Laribee Inn. The balance of the visit was spent with people I love and miss. Not enough time, there never is. Thank you Pat and Eileen for hosting the posse supper. I hope to someday have you all here, although not enough sleeping accommodations! Perhaps in Mexico instead? I am visualizing a beach vacation, sometime in the future, where I get to hang out, drink those pink drinks with friends, each fresh fish and read and tan (sensibly of course). I am hoping to have a bit of hair by then, since it won’t be until 2007, but a “real” vacation has to be in my future, I can only hope.
About the "Incident"
Every visit to CA is celebrated with an official dinner at AsiaSF, thanks to gracious co-owners Larry and Skip, who treat me like visiting royalty. This visit, mid-week, I planned a dinner with Leigh. I wore shoes I never get to wear in Durham, and we sat at the bar. I had one drink, (they make the best lemondrops ever) and we started eating our wonderful food. I ordered another drink an hour into our visit, a Mojito and after one sip, realized I had better not!
We were chatting, the girls had just performed, and all of a sudden, as the crowded place got warmer and warmer, the room started to spin. I must have started to slip off my barstool! Leigh caught me, although I think I knocked her glass of red wine over. A quick trip outside, with fresh air, and I was fine. Except that I think everyone in the place thought I was drunk. I might need a different wig for the next visit. Larry, Skip, it ain't true. I was just hot! I blame hot flashes and chemo these days for a lot of weird stuff. I did get to hang out with Larry and also with Lord Martine, for a while after the incident, and finally there was a new crowd in the place, so nobody was staring!
The week culminated with my second cousin Nathan’s Bar Mitzvah and being surrounded by family. I needed that, and I guess so did they, since people have been worried about me. That Cancer word scares folks. Many of the folks who did not know complimented me on my new hairstyle. Which reminded me of how long it has been since I have even changed my regular hairstyle. So maybe that will be something I do after all this.
I have begun to think about the “after this” part. I need to, to avoid sinking into a depression right now. Nothing is really wrong, I am, as I started out saying, over this. And I want to see what life feels like here, not sick and not slowed down.
My work has been more generous than I could ever have imagined and colleagues have donated some time so I am covered for now on the extra sick leave I need. I found myself forcing myself to go in when I probably should not have. But I simply ran out of time, especially with that long planned CA trip taking up a week.
Without sounding completely mushy, I have to say that this whole experience of having cancer and chemo has been a life lesson. Truly. And not a bad one at that. Friends old and new, have showered me with love and care. My friend Sue, Mom to Noah (also six) from LA came out for treatment number three. And now, as I am facing treatment six, Carrie is planning to spend a week with me and with Sofie, helping me cope with the after effects. The last treatment is complicated even more because Jamie is having surgery next Tuesday and we don’t know how she will be feeling a few weeks later, when I have chemo for the last time. Jamie has been really supporting me and having Sofie at her place for weekends and more, during the week as well. That makes it possible for me to be the slacker I need to be right now. Some days, I can barely muster the energy to be a Mom. It must be boring for Sofie, my not having energy to play snakes or ponies sometimes, but then she gets to spend time with Jamie, so the times I am post treatment are less noticeable to her. Sofie probably doesn’t think I am much fun, but I try to entertain her with “movie nights” on a night when playing is too much for me.
So, with the help of my “care team” of Jamie, Delma, Betty, Tracey, Sharon, Beth, Susan and Joy, I am getting it done. I hope to throw a fun party when I can, to celebrate the people in my life who have been there for me.
Must stop now, and consider a nap.
Friday, June 09, 2006
She is, according to her school teachers and the guidance person, quite popular with her afterschool set. She goes to public school, and her school is at least two thirds African American. Sofie's posse is mostly young black girls, and her language has begun to incorporate some slang terms, ones where I had no idea of their meaning! As in "oh, snap!". For more info on what this means, go to http://www.urbandictionary.com/define.php?term=o+snap
She is slightly infuenced by her peers, they got her thinking and wearing dresses and skirts, but she still climbs and is an active sporty kid. Plays with girls and boys. Not girly, but is growing hair out and that involves all sorts of hair accessories, which go in every day and often are not there by pick up time. I have taken to buying new ones nearly every time I go grocery shopping, to keep us in hair clips. Not expensive one at a time, but they add up.
We are packing for California trip and she has all sorts of ideas about what toys to bring. She is still snake obsessed and wants to bring these four foot plush snakes in her carry on luggage. That will impress the airlines, I am sure. No dolls need apply. And of course, the portable DVD player is essential.
She asked today why we don't go to CA and get our old house back. I asked why and she said, "because it is bigger" (which technically is not true, both houses are about the same square footage, this one is just configured differently). I refrained from explaining how we were forever priced out of the market there! I told her our current house was plenty big, but she went into a long description of how she used to have her toy zoo in the space in the Oakland living room. Her recall from her toddler years is totally amazing. I could not believe how detailed she described the window seat area. And that toy was a 3rd birthday present , but she accurately remembers it. It "disappearedz" over a year ago. This is why is it tough to purge her toy collection, she has detailed recall and will ask for something I "removed" six months ago.
But I have to do those stealth purges, or the toys will take over her space completely.
Sofie thinks both Jamie and I are too bossy. She should talk! But she is also very sweet, very fun to watch grow up. She is affectionate and will come over in the middle of a meal or something, kiss me and say "I love you mom". She also has become quite affectionate and caring of Gracie, our cat. Her compassion gets me every time!
We are in the process of making the guest list for her birthday. One big difference in being almost six is that she has *very* clear opinions about the whole thing, not like last year, when I got to plan the party. From where to have it (Pump It Up, a place with huge bouncing structures for kids to run wild in) to the gift bag items (she totally rejected my idea of cute little stuffed Build A Bear miniatures) to the menu, she is all over that event. Hmmm, who does that sound like?
It is funny how kids who are not biologically related to you can pick up on your mannerisms, characteristics or whatever. They say kids are born with their basic temperments, which I find reassuring to know. But sometimes, I see myself in her and not always in a good way.
I love watching this process of her growing up.
Thursday, June 01, 2006
The first day we went to Animal Kingdom, the one with the real animals, not the Disney faux ones. We took the Safari ride and saw the Lion King show. We walked all over the place (well, Joanna and I did, the girls rode in style in the double wide stroller).
But it was fun, of a sort. We ended the evening with a promise of playing in the pool at the motel at night, but alas, we were pre-empted by a storm. So the next day, we let them splash themselves into a happy oblivion and then headed out to Sea World. With promises of Shamu dancing in her head, Sofie was happy to go. Again, the logistics of the theme park experience took a sit down meeting and pencil and paper. “OK, so if you (Joanna) take them to the Dolphin show, I will head over to the Shamu stadium and wait in the line”. Sounded like a great plan. And it was, despite the huge torrential rainstorm on the way. It melted my Seaworld map, but I persevered. I got there, drenched literally to my underwear, and spent the next hour and fifteen minutes awaiting the perfect seats.
Out of the “soak zone” (Shamu packs a wallop with his/her tail). We had front row balcony seating, perfect. Then coordinates were called into Joanna’s cell phone. Section B, 3-5. I gave her the coordinates. Unfortunately, she entered the stadium on the wrong side, and called back. I stood up, clear on the opposite side and waved wildly, holding my cell phone. Finally, she waved back and soon the whole lot of them were seated and waiting for the show to begin. So, just exactly how did people function before cell phones, I wonder? Would we still be looking for each other in that vast man-made ocean?
The show was wonderful, the girls were exhausted. We circled by the food station and after the feeding was over, headed out.
Joanna and Naomi dropped us off to head back to her brother’s home in Orlando. We were on our own for the last day. Sofie and I headed out to Magic Kingdom on the free bus, knowing the return to the motel had only one option: 7 PM. Not a drop of flexibility there, no sireeee. Once there, we went straight to Tomorrowland, which I think is now more Buzz Lightyear and less Jetsons, and got a FastPass for the Buzz ride. She loved it and wanted to go again. Another FastPass, for about an hour later. We went (twice again) on another more lame ride around Tomorrowland and then back to Buzz. Then FastPass for Space Mountain. A brief break for a popsicle and away we went. I kept reassuring her that the ride would be fun. She was in the middle of a three person car with me right behind her, hands on her little shoulders for comfort. Then WHAM! that thing blasted away and hurtled us through the ride. I had forgotten the roller coaster part I guess, or something. She was squealing in delight, I was about to toss my cookies. I wondered if I should have taken one of my anti-nausea pills from Chemo. Too late. I barely made it off the ride, literally staggering in the heat and with my head spinning. “Let’s do it again, mom”. No way, we were only allowed to go once, it was a rule, I lied. I would never have made it.
We headed to the TeaCup ride, and I realized that there was no way I would be able to handle it. I recruited another parent from the line and she took Sofie with her two twin boys. Sofie was happy to go, she loves those “dizzy rides”. I was dizzy just watching!
But we survived Disneyworld, without sunburn, and got home to RDU in time to meet up with my friend Sue, in from LA to watch over me as I went into round three of the chemo the next day.
More about that, later.
Tuesday, May 23, 2006
Bald is, well, a bit of a startle, but, so this has to be better.
I actually got good feedback from some of my faithful readers who saw the photos of the first buzz and told me I looked “hot”. Hot is so not what I feel these days, but I took those compliments to heart and so now, with my totally Melissa E bald head, I am feeling pretty fine. In the house, I just go bare headed. Outside, I sometimes wear what I call “the chemo patient headscarf” but that is ok too.
Today is Tuesday, four days after treatment two. The pain is pretty harsh from Sunday through Tuesday. But otherwise, not too bad in terms of other stuff. Took the anti nausea pill the first night the next day. No nausea. I am grateful every time that happens. Still my worst fear. Saturday, went to breakfast with Jamie and Sofie. Then I took Sofie for a while so Jamie could do an appointment, I went to the Triangle Families parenting conference, and Sofie went to child care there, totally free (which was so nice). When it was lunchtime, I came upstairs to find her helping out with the setting up of the lunch tables, she was quite proud of herself. We had lunch together, and played with the babies after for a while. Then we left to go to the hair place. After that, Loco pops run and then Jamie took her to a kids concert, I went to Costco for one thing (and got a few more, of course) and then went home. I need to rest a bit. That bit of normalcy on a Saturday totally exhausted me. Wore my “cancer patient” head scarf today, leaving Dee Dee to the work days. At home, wearing a bandana, the air was on and my head was cold! I was ready for bed before 6:45 PM. B O R I N G, this life of mine.
I upped my Netflix subscription and saw three films in the past week. And I am caught up on all series (Huff, Big Love, West Wing and Desperate Housewives) that I watch sporadically.
Sunday, on the big drugs, I went to see Kate Clinton in a benefit performance for SWOOP, Strong Women Organizing Outrageous Projects. SWOOP does great work rehabbing run down properties for non profits, or assisting with painting and landscaping for older folks who cannot do it anymore. They do one big project a month.
I was more or less on the event committee. Kate was hilarious, and in top form. Laughing felt good, even if my joints and bones were achy.
Jamie and I have been swapping Sofie back and forth this weekend, we split the cost of the new sitter. I was desperate to find a new babysitter, I keep hiring excellent ones who are seniors or grad students and then before you know it, they are finished and they leave school. Becca, the new person, is great with Sofie, and most important, Sofie liked her.
Speaking of kids, it was completely blissful last Friday after chemo to be sans child and have time to myself, even if I did not do much with it! I had been pretty much with Sofie the past two weeks full time, so I was ready. I was alone at chemo this time, had rides to and from, but alone there, thanks to Tracey and Betty. I was totally fine, in fact, I wanted to try that out. I watched a movie on the portable player and started another, but then I was done. It was easy and went well, so that was good. Volunteers come around from time to time, bringing beverages or crackers…So I was able to get a diet coke when I wanted one. I brought healthy foods (apples and carrots) for snack and my own coffee, I am so spoiled now, I tote my Peets in the travel cup pretty much everywhere, even out to breakfast.
Now, I long for a massage. And I am planning one, again thanks to Tracey. And I have had wonderful messages, cards and calls from friends. As this is now “one third done” (two of six treatments down), I am feeling quite grateful and appreciative of everyone in my life. (Originally written May 9, 2006)
Thursday, May 18, 2006
The last weekend of April, her recent caterpillar obsession came into play and she insisted on bringing one home from the Museum of Life and Science. I quickly fashioned a temporary caterpillar condo, (those gladware disposable things have many additional purposes). I was sure it would be dead by dark, or surely the next morning, but it is Monday night and the little critter is thriving so far, and Sofie has been cooing over it and playing with it and making sure it has leaves and water. So who knows. My mom is sending her a proper butterfly habitat via the Discovery Network, ASAP.
I said something yesterday about it making a cocoon soon and she corrected me, "not a cocoon, Mom, a chrysalis". I am not even sure I spelled that correctly. Evidently, cocoons are for moths, not butterflies. I have lived five decades and did not know this. She is so gentle with this little creature and so sweet. She played with it on her placemat so it would have enough exercise. Then she was singing to it last night before it went to sleep. Um, to bed. Whatever.
The Habitat did arrive and not a moment too soon! “Catty” her caterpillar had actually grown and was being quite responsive to Sofie’s attention. I put her in the habitat (essentially a webbed cylinder with a zipper top and butterfly designs for effect). The next morning, I went to do my early morning check on the critter and it was nowhere. Not in that habitat, not on the table. I almost panicked and then notice that it had indeed that very night, formed a chrysalis and was hanging from the top of the habitat. I think we have a week to ten days, and then it will be a butterfly. Then we plan to (don’t laugh) mail order five more caterpillars. We will set them free a day or two after they emerge when they are butterflies. This was a hard concept as she wanted to keep them all in her room, but I found myself saying something like "butterflies must be free" before I burst into giggles she did not understand.
So, here is the brief story of the photos. Please note the official babushka color of the kerchief is TEAL, but we improvised for now. Teal is not that easy to find, but I am on that.
When I decided I would get my head buzzed, my dear friend Alan offered to do something in solidarity. That turned out to be getting his dog, Kimo, buzzed (AKA, the “summer cut”). The babushka was a stroke of genius. Then Alan himself decided to get buzzed in solidarity. He also mentioned that after visiting his local Castro Street barber, he emerged to admiring glances on Castro Street. Is it any wonder? He looks fabulous.
Then Eileen got her hair cut shorter than she usually does and wrote about the issue of choice in this hair cutting. Then Lisa, who looks about as cute as any adorable little butch girl can, got her hair shorn to about an inch or less. And Lisa has beautiful thick hair. Her cap is what she refers to as “The Brooklyn Babushka”.
When I went to “Lovely Lady”, the wig place to get shorn by the owner, Darlene, Sofie came along and we played with all the hats there and the scarves before the big moment. Beth Wolfe took a ton of pictures, some of which I am sharing here. Sofie and I mugged for the camera, and Sofie took a photo of Beth and I and actually did pretty well.
One funny, ironic thing, is that Sofie’s homework book that night was called (I am not making this up) “The Wig”. We brought it to the place and read it there.
The faces I made during the process were not due to being upset about the shearing, the razor noise was *very* loud and also the hair kept falling into my eyes, my nose and my mouth…..yeeeech. The finished head was pretty startling, and I had not seen my natural color on my head in at least 15 years, possibly 20! You be the judge, but I think it was not as bad as I had feared. In all the excitement, however, I forgot to put on the babushka for the photo shoot. Rest assured, that will happen, I now own at least 8 of them in assorted colors.
I did not think I would do it, but that weekend, I went out in public with my short hair (making sure to wear a dramatic lipstick color as well) and nobody fainted.
Then those little hairs started falling out on Monday at a rapid rate. All over clothes, the pillow, all over everything. Like having five shedding cats. So on Saturday, I stopped by my regular hair place and asked that he buzz it pretty much all off. That night, when I passed a mirror in my home, I was startled, as I guess I forgot that I had done it for a minute there. But now, it is just easier. Dee Dee goes out in the day to work, the rest of the time, head scarf. The wig makes my head hurt after six hours.
Thursday, April 27, 2006
It is later than I should be up, and it is thunder storming outside, good, because once again, I did not water when I should have. I am counting on Mother Nature to help me out these days. So far, so good. Thanks, Mother Nature….keep this up, please.
A couple of things, as it is late (late is now any time after say 9 PM)
I am mostly doing fine, the first chemo was the 14th, so this is about day 12 or so post treatment and I still have hair. Not for long, as it is getting buzzed tomorrow in anticipation of the total loss of hair expected between now and day 15 or 16. I had a moment this AM, while blow-drying my hair as usual, that perhaps I would be the one person in chemo history *not* to lose her hair… Call Guinness Book of Records… yeah, that’ll happen. So tomorrow, on nearly everyone’s good advice, I am going to a supportive person, Darlene who runs “Lovely Lady Boutique” (for people like me) and she will buzz me and style Dee Dee (the wig).
I am accumulating a little collection of hats and scarves and head toppings. I am looking to bulk purchase teal bandanas, as teal is my cancer’s official color. Wish it were purple or fuchsia, but teal it is. This, like many other things, is simply out of my control.
Who knew when those yellow, then red, then pink ribbons appeared, so many years ago, that an industry of sorts was being born. Pretty much, these days, if your disease or issue doesn’t have an official color, you might as well forget about it. I should have invested.
So, the “theme” for the first round of chemo is “chemotherapy is not a walk in the park”. After I had the first treatment on Friday the 14th, it went well, I guess, and then I went home after six hours, where my Mom and I played another game of Scrabble (I beat her this time, but the game, like most of those we played over the next couple of days, was close). I went to sleep a bit early, but was nausea free (thanks to the big GSK drugs) and woke up Saturday AM feeling “normal”. So did the regular Saturday errands, went to a birthday party for twins where they had ponies, you know, normal stuff. Felt pretty darn good. Kept taking the anti nausea drugs as instructed.
Sunday…awoke not nauseous so thought I would try it without the drugs and see how that went. Tried to swing my legs off the bed and holy crap! The most killer pain in my legs and joints/bones!!! Like one of those round metal truck things they use to smooth cement had run over me in my sleep, several times. But sort of from the inside out, not bruises but pain/ache/pain/ache/pain/ache. Took therapeutic doses of Ibuprofen, which did not even touch it. Mid-day I broke down and took big pain pill, leftover from the surgery. Good thing I had a lot leftover, because this pain lasted through Tuesday. I am usually not a pain-wuss, but this was something else. I am so grateful Mom was there, not only for the Scrabble distraction, but she helped a lot with Sofie. Sofie is being pretty darn cooperative about the whole “Mommy is feeling a little uncomfortable today” messaging. Most of the time.
So, the other things they (they is the team, the folks that are now controlling my health, recovery, treatment, whatever). They are concerned about the big drop in my white blood count after one week, (I get blood tests weekly now for the next four or five months) and also my red blood cells. I dropped there too. That accounts for the fatigue I am noticing. I am ok in the day mostly now and don’t need naps as I did during the bad pain time, but I am really tired by say, 8:30-9 PM. Which essentially means:
I put Sofie to bed, and then I put Debra to bed. Not to sleep, I watch HBO or Showtime on demand, or read but essentially I am in for the night. This evening is a huge exception, probably due to the ice cream cone sugar infusion earlier this evening (it was Ben and Jerry Free Cone Day, I had to!!!).
So, a few things to know:
Please do not be offended if I do not answer the home phone (or cell) after 9 PM EST, I could actually be sleeping or resting!
Nobody would guess I am fatigued at all during the day. My energy is still greater than many folks not on any medication during the day. I know I am waning a bit, but it is not all that obvious, I don’t think.
So far, the chemo has not affected my appetite. I am getting worried, if I cannot experience a loss of appetite on chemotherapy, there is no justice in the world. I might have to fake it.
I am starting a list of “Ten Good Things About Chemotherapy” (inspired by a borrowed book called “I would rather do chemo than clean the garage”.
1. No need to shave legs this summer
2. Will save several hundred dollars on haircuts and color
3. I am learning the lost art of scarf tying
4. I can get a lot of sympathy by “pulling the C-card” if I need to
5. I am forgiving myself for not having my house in perfect neat order….”I am just too tired to do it now”
6. Hair care in the morning is about to get a lot easier, I think
That is all I have so far, but I suspect there will be more.
It is funny, I realized the other day that it is completely against my nature to do what I am doing now, turning over my free will to the medical establishment! I did it during the period of my life when I was doing fertility treatments and now, once again, my body is not completely my own. I take enough pills in the AM to substitute for breakfast. And I had to buy the large Costco size of Benefiber. I won’t bore you all with the details.
Now, for the part that some will not want to read….so consider yourself warned!!!
The other part of this whole thing that is a bit overwhelming is the medically induced menopause. Prior to this, although my chronological age was right up there, I simply wasn’t experiencing the symptoms of menopause, even though every medical person assumed or thought I was completely over it!
So imagine my surprise the first morning I woke up around 5:30 AM, sweating and hot. First thought (I swear, this is true) “damnit, I must have left the heat on overnight”.
I padded to the thermostat to squint at it, only to see that it was fine.
But I clearly wasn’t!
Like a time delay process, it dawned on me…..so this is “IT”. Yuck. Maybe it will only happen this one time. Optimist that I am.
It is now happening more, as I was told to expect. They (those medical folks again) cannot really tell me how long this might last, or how severe it might get. So I am just trying to keep a sense of humor about it, breathe through them and consider it just part of the hand I was dealt. We will see how long that lasts. I did pack up all the warm nightwear, as that seems like a silly idea now. I make my own heat!
I admit to being a bit anxious as I face the razor tomorrow. Melissa Etheridge looked hot bald and so did Samantha on Sex and the City (Kim Cattral would look hot with a plaid head). But I am neither of those gals and so I hope I don’t feel too self conscious.
I have started to see bald headed women in more places in the past week or so. Did I simply not notice before?
OK, I really do have to sleep, so good night all. I will let you all know when the blog and the photos are up.
Love to Alan (and his faithful dog Kimo) for shaving their heads (and for Kimo, pretty much the whole dog) in support.
The full photo gallery will follow as soon as I can do it.
Love to all of you who constantly remind me that I am loved and prayed for and the recipient of good, no make that great, energy.
Next chemo I am going solo, but someone will drive me. And I purchased a “summer read” type novel for entertainment.
More about the Care Team next update, I meant to write about that, but it deserves its own update or blog entry. Trust me on that!
YIKES, big thunder, I bet Sofie wakes up and wants to sleep with me.