when everything is connected

I've stumbled across the astonishing blog of Derek K. Miller, a tech writer from Canada who intimately chronicled his battle, and recent death, from stage 4 colorectal cancer. He was a mere 41.

I say astonishing because I find myself relating so closely to his insight, the way he adapts to his disease, his matter-of-fact logicality and humor. He was able to prepare for his own death, and even had a living wake- basically, one final chance to party it up. The last post on his blog was published posthumously a few weeks ago, a somber summation of his life and what its really like to die.

"I haven't gone to a better place, or a worse one. I haven't gone anyplace, because Derek doesn't exist anymore. As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn't make it through a particularly frosty night. The evidence is clear that once I died, it was over."

I'm so grateful that Derek had the resolve to share his cancer with the world, with the infinite interwebs, with me.

It reminds me that this blog is important too, for just that reason.

So, some people are dying right now, and some are still fighting , but I am living. Really living, moving on, trying to forget the scarred past, the residual pain, the uncertain future. Filling my head with the scent of new summer rain on unexplored Brooklyn streets.

I can't forget it, but I can build on it. I will add new layers. I will stabilize my crumbling foundation like this old brick wall outside my window. Still standing, somehow.

I'm happy for every miserable second of my life.

Rest not...

"...life is sweeping by; go and dare before you die. Something mighty and sublime, leave behind to conquer time."

(Goethe)

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?