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
Deep Thoughts
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' ?
YES NO
If only it were that easy!!!
August 25, 2006Tiredness 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
Reality Check
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!!!!
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