environmental chchanges

The radioactive iodine 131 being found in rainwater from Japan is the same kind I had to ingest for thyroid cancer. Interesting. Does this mean I can go singing in the rain, holding my tongue out? Is this what my healthcare will come to?

Isn't it fascinating how we combat disease by prescribing what causes it? Radiation for cancer, inoculations and vaccinations for infectious diseases. We cheat death with his own devices.

The port removal was a great success. It hurt, but only in the moment, which is more than I can say for chronic pain. My surgeon was a professorial old black gentleman with massive white sideburns and a striped bowtie. He told the nurse all about the Prince concert he'd just attended. David Bowie's "changes" played on the radio in the background, which I am inclined to take as a good omen despite its ubiquitousness.

Here it is, looking rather like a purple heart:





The view today:




just so I don't forget it.

bad weather

I've just taken a bath. It's a ritual I am practicing more and more, a kind of cleansing of the self, a time for unhindered introspection, a warm moment. My baptism to the bed.

As I lie in the bathtub looking at the body below me I was struck by how similar it was to all other women, in shape, tone and size, my hipbone disfigurement barely noticeable now, just a lopsided permanent tan and some atrophied muscle. I feel increasingly alienated from my body, as though it's something entirely separate from my mind. It doesn't accurately express the disfigurement within, all that scar tissue and all of that pain. It's normal, it's not mine. It is the archetypal woman, it's not mine. If I expressed outwardly what was inside, I'd look like the elephant man.

I foundLucy Grealy today through a friend- she lost half her jaw from Ewing's Sarcoma as a child and wrote a book entitled Autobiography of a Face. She died of an opiate overdose in 2002.


Out of bath. Into warm bed. I am grateful that my body remains intact. Port comes out tomorrow.

ouchies

It is Monday, and my port is scheduled to come out this Friday. I'm going alone, as no one seems to be available to escort me. I'm hoping it will be much, much muuuuch less painful than the operation to have it put in, see this post from 2008.

For the insertion of the port-a-cath they only gave me localized anesthesia. I was AWAKE for everything, from threading the catheter into my jugular vein (terribly weird sensation) to the stretching of my skin for port placement (which was so painful I was tearing up, whimpering, telling the nurses I could feel it all... to no avail).

It goes without saying that I'm slightly nervous, but I've been assured that the removal will be easy. For those of you who have never had a port, or were lucky enough to be under and have no memory of the procedure... there are tons of videos on Youtube that allow you to experience it vicariously!!



Skip to 4:00 to see the painful part I still have nightmares from... no wonder the surgeon dubbed it over with dracula music. ah ah ahhhh.

apt statement.

question.

My fellow cancerites, bloggers, readers:

How do you stay strong enough to keep going?

blogaphobia

When ever I haven't blogged for awhile I get anxious, thinking I have to blog, enduring a massive writer's block and forgetting all of the things I wanted to say in the first place.

meh.

I've taken a few weeks month off to attend to personal issues, i.e., the rearranging of my life. I've made some progress. I am short one life-partner at the moment, which saddens me. To stuff the pain I've also been purchasing an unfortunate amount of socks from this store.

Our project has been funded and we're delving deep into the world of comic book production, from learning spacial layouts, to composing an epic story with a slight (hopefully not too cliché) nod to the hero's journey. As we come up with new ideas, the story keeps getting richer, more coherent, more inherently awesome. I really can't wait to see it in its final form.

In addition, I'm designing a small capsule collection of metal free dresses & separates to go with the printed scarves that we offered our backers. These pieces are meant to be an alternative to the lowly hospital gown, but beautiful enough for a night out. We plan to launch the collection and comic together. Ok, enough gushing!

Here are a few photos of my sketchbook and our project board:

Health-wise, I've been having the same problems-- scar tissue/nerve pain, GI issues such as vomiting, cramps, weird BMs, depression, and many side effects from the methadone, which consequently makes everything else worse, I suspect. Side effect I hate most from methadone: sweaty palms!

I'm still on the hunt for a pain regimen that works.

Had a lung scan last week and I'll see an oncologist about it on Wednesday.


That's about it for now. très intéressant, I know.

oh come on.

Heath Care Repeal vote passes house...

It's terribly ironic that this happened the day I was being interviewed about healthcare. I grew up with the idea that my culture inherently meant well and had some sort of moral compass. I am increasingly disillusioned. We are all so detached.

ok, I'm convinced that sharing my story will help somehow. I'll do it.