Hot and bothered

This is my son, Adam, on a hot day in the desert. He seems to be withstanding the heat pretty well. I've titled this collage "Desert Journey".
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I've done 14 of 20 radiation treatments to the sternum so far. I'm tired and a little cranky, and I'm getting quite a sunburn, but other than that it's been a piece of cake.

Did I say cranky? Perhaps surly is a better word, with a decided bias toward murderous. Don't worry, though, I'm good at keeping that sort of thing under wraps.

John and various friends have been going out of their way to give me rides to the cancer center. I feel guilty, since I know of course I "could" and therefore "should" do it myself and not bother others. Do you by any chance have a knife on you?

DNEC has hired a new executive director (hooray!!!) who will be starting January 22nd. If this radiation works and I'm in decent shape for a while, I want to get back to doing more art, and maybe write a book (she said casually). No, really. I'm thinking about purchasing the Dragon Naturally Speaking software and dictating some stuff. Perhaps someday an alien civilization will use it for their course in 21st century Earthen English. That's my specialty.

Well, I'm babbling boringly, which is something I swore I'd never do on this blog, so I'm going to stop now. I mostly just wanted to post the new collage. Enjoy that summery weather we're having.

I'm brave, or so they tell me

People often tell me that they think I'm so brave, and that if they were diagnosed with Stage IV cancer, they don't think they could cope. I keep telling them that they could and would, since there's little else to be done. I'd rather keep living than stick my head under the pillow.

Once in a while, though, something gets to me. Though I've been asking people to drive me to my radiation treatments most days, because I know I'll get exhausted at the end if I don't, I drove myself today. Just as I was about to make a right turn into the parking lot at the Gray Cancer Center, an SUV bearing the Hartford Hospital Security logo screeched across the entrance, blocking the way. A little man jumped out and furiously waved on the car in front of me, which proceeded meekly forward. I pushed the button to lower my passenger side window. When the guy saw me lean to the right to speak to him, he began to wave in an exaggerated manner, and yelled, "Not unless you have a medical emergency".

Well, this ticked me off just a bit, and I started to reply, when he seemed to get really enraged, and yelled, "Do you have a medical emergency?" I said, "No, but I have to go there!" He waved his arm to a spot on the side of the road and growled, "Just park there".

When I got out, there were a few gawkers around, but nothing really to explain the reason for the class one alert. So when I got inside I asked someone at the reception desk what was going on. She told me someone had had a seizure in the parking lot.

Now, keep in mind that this is a hospital. Surely they've had visits from people with epilepsy from time to time. And the parking lot that was summarily closed is where people with cancer, some of them close to death, are dropped off to enter the place where they have the treatments that keep them alive. No, surprisingly enough, I was not there to read the magazines, and though the wonderful people in the radiation department often provide homemade baked goods for us, if I had my choice, I'd just visit a local bakery to satisfy my sugar cravings.

I was homicidally furious. The hospital CEO will be receiving a letter.

All of this just to make the point that, yes, I cope. But don't leave the cover off the toothpaste tube, or you'll have to face my wrath.

Have a happy, scrappy, new year...

Just feeling silly, I suppose.

I grew up at the end of a little road off route 156 in Waterford, which is the road that branches off shore route 1 and continues along the shoreline while route 1 branches a little inland.

The road was (still is) called 'B Lane'. It didn't merit a real name, I guess.

About a half mile long, the road climbs slowly to a dead end, which is where our house was. The road was dirt until I was about six or seven, which made it a decent place to sled. It was a sad day when they paved it, since that meant they also plowed it. The kids who liked hot rods were happy, I guess.

My parents' house was one room and had a dirt floor when they moved in shortly after marrying. They partitioned the room to make a tiny bedroom and an all-purpose room, and put in a floor. Eventually they added a room off the first bedroom, where all three of my brothers slept. I slept there too, though my oldest brother's departure shortly after I was born (he's seventeen years older than I am) made it somewhat less cramped. When I got to be about four, I think, another addition was built on the other side, off the all-purpose room. I vaguely remember it being built. So then we had a living room and I had my own bedroom. The total square footage of the place couldn't have been 600 sq. ft.

My childhood friend Pat and I went up there this fall. It felt very strange; I kept getting a sort of deja vu-like feeling, which is a little weird considering that I was hardly absent a day from the place until I was over 20 years old.

Neither Pat's nor my house is still standing. It looks a bit less like little Appalachia, though it's certainly not an upscale area.

I'd give anything to go back into the woods behind where my house used to be. When I was a child, I spent a lot of time back there, playing in the tiny stream that ran close to the woods' edge, or reading with my back propped against one of the boulders the last ice age's glacier had kindly left for me.

Sometimes I would get quiet, knowing that someone was there. The presence didn't feel menacing; I just knew I had to respect it. We used to find arrowheads there and in the back yard, and after a while, I became convinced that the spirits I felt surrounding me were the natives who had left those stone bits behind.

I dream about B Lane sometimes. They almost connected another road from the other edge of the woods to it, back when my mother was home dying of colon cancer, but ledge kept them from completing that project. I'm glad.

Good morning! Surprise!

The phone rang early this morning as I was getting ready for work. It was the manager of the radiation oncology department at the Gray Cancer Center.

I just missed the call, but the message on our answering machine was, "Hi! This is Sue calling from the Radiation Oncology Department. We're ready to start your treatment. We can start today. Can you come in?"

No! No! I need time to prepare! Psychologically, I mean! Besides, John has a toothache and has to go to the dentist!! I can't do this all by myself!! I want my mommy!!!

So, I went to Connecticut Valley Hospital for the holiday meeting of the Keep the Promise Coalition, where I got a small award for entering a card in their 'cards for legislators' contest (that was nice), went home to do some work on the computer, then drove to Hartford and had my first radiation treatment. I'm scheduled for 20, rather than the 25 that Dr. Bertsch, the radiation oncologist, had first proposed. I saw her briefly today, and she said something about how this was the only way she could figure out how to do it without damaging my heart and lungs. Of course, I wasn't prepared to respond, but I'll have to ask: are you trying to say, you wish you could treat it more aggressively, but can't? I suppose, actually, that that's always the conundrum...how to kill the cancer cells without killing the patient.

I have my regular treatment tomorrow, and the radiation department will "squeeze me in" after my appointment with Dr. Schauer, while I'm waiting for the Herceptin to come down from the hospital pharmacy. I'll ask Dr. Schauer my questions. Pat, who is sort of my guru, is meeting me at the hospital, and will stay for the treatment. She wants to meet my oncologist, and see what the whole scene is like. She has committed to seeing me through this whole process--the process of dying, I mean.

A little poem for you, from the wonderful, wonderful Wendell Berry.

...For the Future

...

Planting trees early in spring,
we make a place for birds to sing

in time to come. How do we know?

They are singing here now.

There is no other guarantee

that singing will ever be.

...

Wishing you great blessings 'on the eve of the holy night'. Tomorrow, at 7:22 p.m. EST, the light is reborn!

...

May

Tattoos and other fine things

I got a new tattoo today.

I had a CT scan to plan for the attack on the tumor in my sternum this afternoon. The radiation techs told me that they were going to try to use the five little tattoos I got for radiation to the breast--they're used to precisely aim the x-ray beam--but after they did the scan they decided they needed one more. So now I have six little indigo dots on my chest. And one beautiful vine twining around my right wrist.

I should have asked them to do my eyebrows. They never grew in quite right after chemo.

I expect to hear from Dr. Bertsch toward the end of next week. I have a Herceptin treatment with Dr. Schauer, my medical oncologist, on the 21st (the Solstice, birth of the light!), and he'll probably have talked with her about the plan for radiotherapy. Treatment will probably start right after Christmas, or perhaps they'll have to wait until after New Year's. I imagine the schedule gets tight with people taking time off around the holidays. Anyway, I'll keep posting.

Real life

So, I was on my way to have my body buffed, my nails airbrushed, my feet dipped, my lip waxed, my eyelashes tinted, my brows threaded, my skin exfoliated, my ears candled, and my hair extended when real life intervened.

Darn, darn real life.

It was fun writing that first sentence. It's quite true, though, that I never cease to be amazed at the creative ways in which human beings can waste money, and, more important by far, time.

I was a pretty teenager, after having been a homely child in all my younger years. I enjoyed the attention that being attractive got me, but I never made the mistake of thinking that either the physical attractiveness or the consequent attention meant anything.

This Sunday I will lead the Brooklyn Unitarian Universalist Society's Solstice service for the fifth year. The theme will be paradox.

I don't talk about this much, because it tends to be perceived as a sort of "holier than thou" stance, but about eighteen years ago I had what I came to regard as a mystical experience. It's difficult to explain, but I suddenly--and for a period of months after--"knew" the unity of opposites. Not as "joy in pain", or even just "death as necessary to life", or that kind of thing. In a moment of gnosis, I saw opposites as the same thing.

I wish I could have that knowing back. Intellectually, of course, I can experience yin and yang, but I want to know the circle again. We all need to know, truly know, that we are the seed of our own death. Life gains so much more meaning if we come to that understanding. And so I am left, again, with "ripeness": the moment of perfection is the moment of death.

That's me in the corner...

Wow! I guess it's been a really long time since I posted.

A huge number of things have happened since then. The biggest is that I had my PET/CT scan, just four months after the last one this time, and it seems the tumor in my sternum is growing.

Of course, I knew this would happen, but I was hoping there'd be more stable time. The good news, however, is that since I started treatment at Hartford Hospital in April of '05, they have acquired a new technology called "intensity modulated" radiotherapy. The reason I couldn't have radiation before is that the older technology would have caused major heart damage, since my heart is right behind the tumor area. With the new technology, the radiation oncologist says she should be able to limit or altogether avoid exposing the heart to radiation.

I have a CT scan scheduled for December 13 to measure the parameters of the tumor. After that, there will be a few appointments to plan the "attack", and I'll probably begin radiation toward the end of this month.

Treatment will be daily for five weeks, which is problematic, especially since the hospital is 35 minutes in the opposite direction from where I work. But I've told the agency board my situation, and they've been very supportive. My concern is that they don't really understand what's at stake if I can't do all my hours. But I'll just have to do the best I can.

So I had a little pity party today. It's the first time I've cried since the doctor told me the news on November 28. So I probably needed to do that.

On another note, above are a couple of pieces I've done recently. The dark one is a sort of 'holiday' piece which will go up on eBay tomorrow night, as well as being part of a collaborative poster created by my Art Squared eBay group. The part that's supposed to look like a group of city buildings is actually a fractal graphic; I've been having fun with a free program called Xaos. The red one is called "I Am Woman", and features, among others, Annie Oakley with a better pair of legs, Angela Davis on a Wanted poster, and me, down in the lower left corner, losing my religion, I guess.

But I always get it back.