Thursday, February 25, 2010

The hardest loss of breast cancer

Why I'm up AGAIN at 6 am. Nightmares. I am dancing, and I even went out salsa dancing on Tuesday night - it helps. Trouble is I'm getting really physically exhausted.

I'm going through something really emotionally hard at the moment, and it's giving me bad dreams. wertperch and I have never told anyone else much about this, but back in 2005 when I was first diagnosed with breast cancer, I was pregnant; probably conceived when I was in England. When I wasdiagnosed, the doc said there was no way I could postpone chemo for 7 months, and also no way a fetus would survive the chemotherapy. Probable miscarriage, undoubtedy birth defects, yucky stuff. Adriamycin, in particular, is a class C teratogen. In other words, it can cause severe birth defects. In addition, the pregnancy hormones at the time were causing the cancer to progress faster. I had an estrogen positive cancer, meaning estrogen made the cancer grow more quickly. I also had the most aggressive cancer cells , by staging. Very mutated, growing very fast. "We're going to take a big ba, and we are going to hit you as hard as we can." My doctor said it was pretty much a choice - if I wanted to hang on to the baby, the cancer would probably kill me first. Kevin and I talked about it, and he said I want you more than I want that baby, and Tessie and I need you more. It was a pretty black and white decision at the time.

So I had an abortion. A D&C, about six weeks into the chemotherapy. It was actually about a week after wertperch and I got married, in May of 2005. My doctor kindly postponed it a week, so I wasn't in physical discomfort during the wedding. (Keeping in mind that I was flooded with chemotherapy drugs at the time.)

Well, yesterday the imp saw me crying, talking to a friend in ballet class, and she asked me why - so I told her. And she is furious with me - for not telling her, for not having the baby, for not getting her opinion at the time, for potentially having the baby and dying and leaving her. I realize this makes no logical sense, but it's also a huge loss for her. She wants a baby brother or sister more than anything else in the world. Remember, she was 6 at the time.What is the right time to tell her? There isn't. There never was, and there isn't. And it's bringing up this incredible amount of sadness and loss for all of us, on top of everything else.

Kevin and I wanted that baby so badly, I haven't the words to express it.

The part they forgot to tell me was that chemotherapy destroys both ovaries and eggs. If I had known ahead of time, I potentially could at least have harvested some eggs, in the hopes of carrying a pregnancy later. The chemotherapy made me perimenopausal, so now there's no chance of getting pregnant - and the odds of having bad birth defects if I did are really high. I think the doctors didn't offer it because since my cancer was estrogen positive (then) pregnancy hormones would be bad, no matter when. Now that the cancer has mutated, it's no longer an issue, but it's pretty moot at this point - I'm 45, the ovaries are toast, the eggs, well, what was the old ad? This is your brain on drugs? Chemo kills fast dividing cells, and it doesn't differentiate between those we want, and those we don't want.

Needless to say, I had a rough night. Bad dreams, where I was at an adoption agency that more or less resembled the DMV, and they pretty much just said, your paperwork is not in order, so you can't have that baby. Sorry. They took a picture of my license plate, and the tags were expired, and they would not tell me what paperwork was missing - I "was just supposed to know that". Sorry. Then they'd send me to another line, where every clerk looked like Roz from Monsters, Inc., and they all went on coffee break when I got to the front. You know the drill.

Kevin and I didn't talk about it at all until at least a year later - we were so overwhelmed with all the other emotional repercussions, I think we just set it aside, and left it for later. I finally told a close friend who was struggling with infertility about a year or so ago. Secondary infertility is different from primary infertility, but it's still real, and it was still a loss. Of a very, very wanted baby.

So I'm sad this morning. Weepy. Maybe making a quilt might help. I could make a little baby doll quilt. I think I need to grieve, and acknowledge the loss somehow. Her name would have been Caroline Grace, or Helen Grace, if a girl. Wertperch and I never decided on a boy's name.

I don't, these days, have a lot of fear of death. I'm physically so strong, that any chemical, any radiation, any star wars technology they throw at me, I seem to just sort of bulldoze my way through. I don't suffer a lot from the emotional baggage during treatment, I seem to save that up for when I'm between bouts of chemo. But oh, I wanted that baby.

That baby is the biggest thing I gave up because of breast cancer. Losing a breast was a piece of cake in comparison. Breasts are mostly decorative, and the fake ones nowadays are pretty good. I can even adjust the size, depending on whether I'm doing yoga, or going out salsa dancing, and looking a little more bimbo.

Reconstruction is just not really an option. MORE surgery? Elective surgery? That puts me back in the hospital for a week? I'm more likely to visit Machu Pichu. I think I'm much more likely to get a tattoo of a tough old wisteria over the scar than let them cut me up even more. But I don't know what tattoo to put over the other scar, the invisible one.

Baby, we miss you. I'm sorry.

This post is for Sarah, and for Grace.

Monday, February 15, 2010

On Internet Lurve

For Richard, and by a strange concatenation of circumstances, for Laurel

I used to think that falling in love, or being in love required a lot of time. That I should wait, and weigh, and consider, and perhaps make a list of someone's most wonderful (or most irritating) habits, before I committed myself, mentally, to believing that I love them.

I no longer believe that this is true.

I have men friends who claim they "fall in love with" the swish of a dress, sunlight on hair, the turn of an ankle perhaps. Altough I can't say that I experience this, I do find it easy to fall for someone. Perhaps one is visual, the other is mental. Molecular. I don't know.


In order to make sense of this for you, I have to work both backwards and forwards.

I am reading a book called Blithe Tomatoes. It's for my book club, which tends to be Books with Wine once a month. But oddly enough, the author is the husband of the woman who sells flowers at the Davis farmer's market, right next to the booth where wertperch and I sell vegetables.

This evening, I couldn't concentrate on the book, much as I like it. My mind is wandering.

Sunday afternoon, two lovely young men came to interview me, grundoon, and wertperch, about how we met, and the strange and wondrous internet site where that took place. We sat for almost four hours, trying not to look self-concious in front of QXZ's big camera, while Walter asked us questions. How we met, when we actually first met "in person", why we think everything2 became a social network without obviously meaning to, how we've met other noders, whether pigs have wings. It was fascinating, emotional, and very hard work.

And the interview did me a big favor, which was to remind me of a number of things and people that I love, and that interest me. What makes people drawn to each other. What creates the impulse to read some anonymous someone's work, until they don't seem so anonymous, and you start to want to know the person behind the writing. Why creating, and creativity, and a creative community, means so much to me.

So as I was reading (-ish; mostly daydreaming), I was thinking about how I missed Laurel, and wished for more people around me who enjoy the making of things, whether that be writing or drawing, cooking or origami, or the building huge concrete earthworks or statues of women.

And I wondered why I had managed to forget, for most of this fall, that I love the making of things, and the process of the making of things with other people.

Which, in my completely convoluted and roundabout daydreaming sort of way, brought me to Richard.

I met Richard at the Strawberry Music Festival. I had travelled down a day and half early, to try and find a slightly more pleasant campsite amongst the other three thousand Strawberry visitors than the one we had the previous year. I thought I had found a fairly pleasant spot, but not long after starting to set up tents, I got booted out of my spot. I'd slopped over a boundary sign.

This kind fellow from across the road said, come down here! I have more than enough space set aside.

I waffled for a bit, never being very good at accepting favors from a stranger, and then decided it was okay. I moved my campsite, taking up a fairly teeny space on the edge of his site, and then joined him and two of his friends for a short chat.

That chat ended up going on for something around six hours.

Richard is lovely. Interesting, funny, and interested. His two friends were the same. They were also experienced strawberry campers, and had a camp with easily 14 tents, two three burner stoves, a keg - a KEG, people - of beer, and numerous luxuries. And they shared me in without even a blink. Every so often, I would get self-concious about taking up their shade, drinking their booze, eating their food, etc, but they managed to not just seem oblivious to the unevenness of contribution, but to make me feel like one of the family.

And I fell in love.

They asked me questions; and really, carefully, listened to the answers. This is one of the few conversations I really remember where anyone really wanted to know, in detail, what this whole metastatic cancer trip is like, and took the time to listen with total care. We shared stories; every so often we'd be drawn away for music, but in hindsight this was by far my favorite part of the festival, this wonderful person, and the wonderful group of people he had drawn around him.

Now, I know, I know, I have to qualify this. I'll try to separate, clearly, the difference between falling in love like this, and the impulse to possess someone. It's very clear to me that I love people, of many genders, and far too many of them to have any concept of possessing, (or shagging) even a few. This is much more about that feeling that this person is someone I want to keep, to continue to know. It's mostly about that internal recognition that I don't actually need to know this person's bad habits, dreams, values; that I can just love them, like that, without trying, and without expecting or demanding anything.

As soon as wertperch and the others arrived, I told him, I've fallen madly in love with our neighbor, I can't wait for you to meet him. At this point, the crowd was much larger, but they also hit it off, just as I expected.

We traded contact info, and promises to keep in touch.

Fast foward to the rest of the fall. The downside of having people tell you how brave you are facing cancer, and how well you are handling it, is that when you aren't brave, and aren't handling it well, it's harder to admit. This fall I was feeling very angry, extremely sorry for myself, and pitiful. And I could hardly stand to be in the room with me. With that said, not enjoying my own emotional state, I couldn't imagine that anyone else could possibly want to be in the same room as me. Depression and self-pity are two of my least favorite states, and I would like to pretend I never experience them. It's a lie.

And I haven't stayed in touch with Richard, because since I couldn't stand myself, why on earth would he be interested in talking with me? What a useless friend I must be.

But I've slowly been climbing out of that pit. Slowly, sloggingly, covered with mud, but climbing out none the less.

One of the other subjects that came up during the noder love interview, was why I thought that everything2, as a community, became such. What is it about these people that keeps me coming back, that keeps me in touch, as no other electronic "place" does?

And I talked about Laurel, and that feeling of love, that here was a person I could value, before I'd ever met her.

This post seems to have no conclusion. It was a strange thread of ideas that I was trying to get down, I may try to break it down into smaller bits as I think on it. More soon.