Friday, October 30, 2009

I was in the running for a hemipelvectomy but I chose radiation and that (thankfully) worked for the time being. Even so, the thought of becoming an amputee, even if it is just part of your pelvis, is terrifying.

I've found a great resource for those facing an amputation due to cancer:

They've even got a support group. Check it out!

Thursday, October 29, 2009

It's all good.

Every time I go to the hospital it's like walking into battle with a butterknife. I become helpless. Literally, the sight of the word "infusion" displayed in bold letters on the back wall caused tears to well up in my eyes. This visit was much calmer than last time, though, partially because I was prepared for my feelings, and partially because I had a comforting shoulder to lean on.

CT results are N.E.D. My scan is showing improvement of the inflammation that radiation has caused. All looks good. My oncologist won't let me take my port out until the next scan in January.

All looks good...

The physical seems to be healing faster than the psychological. I'm trying my best. It's hard watching my Ewing's friends fall; I feel guilty for being so lucky. I wish there was more I could do, I wish I could change things for all of us.

I've recently organized all of the self portraits I took during treatment and have posted them to my FLICKR. It's interesting to see my range of emotion... the cute to the terribly ill. You can see a weight in my eyes during the chemo sessions. My eyes look like anvils. Perhaps my documentation will help some of you... look! You're not the only one who has had a disgustingly mangy half-bald head.

My friend and I are working on an art project to raise money and enrich the experience of other cancer patients. Remember Cancer Girl? We want to make her into a full-length comic that will give you something hilarious and uplifting to read while getting poison pumped into you. I remember my attention span being shit when I was getting my chemo... a comic would have been perfect.

Let me know if any of you would like to be involved in any way.

I hope you all are doing well!

Monday, October 12, 2009

Everything will be Alright.

No word yet on test results.

I found out Friday that one of my Ewing's buddies died. Not "passed away" or "went to a better place", but stopped-breathing-doesn't-exist-as-a-living-being DEAD. We went through treatment together, relaying philosophy on illness, life, and death. We both subscribed to the Taoist notion of "go with the flow", as it were. When he started learning the piano, I followed suit. We were both stong and vegetarian and cynnical twenty-somethings. I had no doubt he would be fine.

If you are lucky enough to be initiated into the Cult of Cancer, your brethren will soon become your support system, your best friends, your partners in chemo crime. And, inevitably, some of them will die on you, and you have to accept it.

I am in the midst of mourning for my cancer companions, to whom I relate in experience more than anyone else, more than my best of friends, more than my own family. I think of you every day. You live inside me now, in my thoughts and actions henceforth. I live for you. You are me.

Everything will be alright.

Wednesday, October 7, 2009

D-Day or CT-Day?

My 6 month scan is tomorrow.

I am nervous but the prozac+wellbutrin combo is making me pleasantly detached.

I am happy with the present, I do not want to go back.

mmmm my dinner is going to be a barium shake...

wish me luck.

Saturday, October 3, 2009

Friday, October 2, 2009

Almost Forgot.

Janell emailed me quite some time ago about LiveStrong day, which is apparently today, and meant to celebrate unity on the cancer front. Now... I don't like Days; I mean, why don't we all just have a Day everyday, a Day for the morbidly obese, a Day celebrating my first poo, etcetera etcetera.

But I do like Janell so I will post. The LiveStrong org has some great scholarships for young adults, so kudos to Lance. And of course, I'm all for cancer unity. I don't have the balls to make a joke, but then, neither does he.

P.S. I declare morbidly obese day tomorrow, the 3rd. Free cream puff!

apres moi le deluge

It's so easy to forget you had a life-threatening illness once you're better. Yes, I talk about cancer, but I am often detached from the subject. It has become foreign to me again.

I haven't slept a wink for days.

I'd been working on a school project like I always used to do, all night long, when suddenly cancer slapped me upside the face and I realized it's been 5 months since the end of chemo. Five months and I'm relatively normal again. Friends, school, design, work. All of this could come crashing down again any day now. Maybe I am just anxious for my scans this month?

I haven't slept a wink for days.

I've been trying to write about treatment in hopes of some sort of catharsis. It's a memory and a place to which I never want to return. Below is a bit of it. That's what cancer is like. Seriously. Exactly that.

Remember lying amidst the savage darkness, the hollow sound of idleness, waiting to either die or live, but only waiting. Wishing fate had a backbone. The feeling of your body plotting against you, wanting to reach in and exhume your disease, to tear apart tendons and scrape the bone clean. Oh, to be clean. Fevers like little deaths, dying only to be painfully reborn again by sunrise, watching that glowing orange eye rise and wink, upon which you realize the world must be mocking you. You'd rather end than watch the cruel parody of daybreak again. the sky is insufferable.

Unable to walk, unable to get out of bed. Jealous of the dust bunnies and all other moving unknowing things. The minutes build and you bear them on your shoulder like phantom bricks, the heavy load of an empty moment, and then the hours come, inevitable, breaking your back.

remember the retching. A wretched way to live, waves of sickness like the tides coming in, swelling up and foaming at the shore. A tidal heaves up, up, and out, crashing down, we've had an exorcism all over the kitchen floor, hallelujah, praise jesus. I exorcise all day long. they say it's good for the soul. After the floods an eerily satisfying calm settles in, as if the body has made peace with it's own volatility.

remember the killing machine, the feeling of poison pumped through your veins, the sting of the needle as it went through your chest. You could taste the chemo under your tongue. It would not go away. It became part of you and you became it, inhuman. You would sweat inhumanity. Murder poured out of your pores. The paradox of your body wanting to live, violently so, and your only cure is to kill it...