QUESTION.

If I were, hypothetically, to use my fashion design skillz to make a product that would promote cancer awareness and donate part of the proceeds to cancer research, what would you want me to make?

Or, more appropriately, what would you want to buy?

A dress with paisley cancer cells printed on it? A t-shirt with a rad cartoon? A silk headscarf with a funny hair pattern?

Please share your ideas. I want to design a piece for cancer awareness that escapes the whole corny pink ribbon thing. Something chic and fresh that you would be excited to wear.

comment away!

I wrote this in my journal around June. Obviously it was written for myself, but now I'm giving it to you. I come back to it every so often. It's easy to feel helpless post cancer, but we're not. We're not helpless or hopeless. We have an amazing amount of strength within us.

Cancertainment

Ah, it has been called to my attention that I have been NPR blogchecked. Yesterday's edition of Fresh Air focused on young adults with cancer and specifically, the difficulties of obtaining healthcare in our country. Thank you Iva and Kairol for sharing your stories. Listen further:



A friend commented that "cancertainment" is perhaps taking the word-combo trend a bit to far. I might agree. What's next? Aidstastic? Hemroid-rage? Flesheatingbacteriawesome!

A word on my personal heathcare situation: I am a 24 year old unemployed student with a pre-existing life threatening disease under my belt. I'd pretty much be fucked if it were not for my mummy's fastidious savings and willingness to pay the $430/month for Cobra.

The service I get at Kaiser is atrocious, and it would be perfectly acceptable if it was free or somewhat affordable. I'd shut my mouth and gladly wait in line. But paying hundreds of dollars up the arse every month only to be ignored/referred/pushed to the side is unacceptable. I love Kairol's story about how security had to be called because she demanded an appointment at Kaiser Oakland. Hells yeah! I feel like I'm dealing with the phone company when I'm at Kaiser. But... you can't threaten to take your business elsewhere as with most companies, can you? "Oh? You don't like our service? You're overcharged? I'm sorry for your inconvenience. Go die then, see if we care."

[One thing I must commend Kaiser for that has nothing to do with the company at all: the oncology nurses are the greatest, most caring people in the world. This is the only redeeming aspect of my healthcare experience.]

Anywho. Here is a new hair update. I've dyed it blond, well, because I can. See further:



I look kind of grumpy and ill-rested, I know. I've been having terrible, TERRIBLE nightmares. The kind that make me nauseous in the morning and stay with me all day long. One in particular I still can't get over. In this dream, I have a fist-sized hole in my chest, partially covered with flaky scab skin. I am looking at it in the mirror. I start to peel off the dead skin, revealing a rotting, decaying cavern within me. There is a little bar of soap stuck inside. I am disgusted but also morbidly fascinated.

I'm thinking this image spawned from the trauma of having my port put in, as well as anxiety about my body. It still makes me uneasy thinking about it. I feel violated, I feel raped by experience.

Have you had strange nightmares about your cancer experience? Care to share one? I remember chemo gave me amazingly vivid dreams. Ironically they were happy and full of excitement... I wish I could have them back, minus the drugs.

Trigger Happy

I haven't told you, beloved blog readers, because I don't want to be worrisome, but I've been having pain where my tumor used to be. It's been an ordeal to find an oncologist here in San Francisco- they won't assign one to you unless you've seen a GP, which I don't have, duh, because I have cancer. It took weeks to get a referral from my own oncologist back in Sacramento, but finally, I was able to get an appointment on Tuesday.

This was my first time in SF oncology and, um, talk about triggers. They make you wear a wristband regardless of whether you are getting chemo or seeing a doctor, while in Sac they only banded me for chemo. So, as you can imagine, the band sent me into panic mode and tears started welling up in my eyes.



Fast forward to the doctor visit, they don't think my pain is cancer related since I was NED on a scan 3 weeks ago. It's probably scar tissue, but we will "watch and wait" (don't you love that phrase?). I asked when I could have my port taken out, and the onc said I've got to wait until my next scan. "But when is the last time you had it flushed?", she asks. "Uh, May?" I mutter. Oh crap, I forgot about port maintenance. "You need to get it flushed TODAY." Double crap. I can't face the infusion room just yet. But... responsibilities and such. So I sit in the ugly mauve alcohol soaked recliner and try to keep it together.

No such luck. I start hyperventilating and sobbing, trying to explain to the nurse that it's the first time I've been back since chemo. She just looked sorry for me. I sucked it up towards the end and got my saline/heparin injection just like I've done a million times in the past. I was numb throughout my treatment, but now that the trauma has settled in I'm a nervous wreck during such small procedures. I hope it gets better.

On the positive front, I am getting ready to start my senior year of school, the one that I had to quit in leiu of chemo. I am excited. Let's hope I make it past the first class this time!

PTSD and me

I've been having a difficult time with post traumatic stress since the end of chemo. I am avoiding the hospital like the fucking plague. Who knows, the black death could very well be lurking the halls of Kaiser somewhere. Best to stay home, right? Wrong, I know I know.

I can't read the archives of this blog; it's far too painful. I don't even remember writing half of it. The words literally make my stomach turn. I have nightmares, insomnia, et al. I can't be in any sort of sterile medical environment without breaking out in a cold sweat. Whilst having my teeth cleaned recently I had a mini panic attack because the dentist's chair reminded me of the chemo recliner I befriended during treatment. Blarg. Barf. Ick.

My point, I suppose, besides bitching, is that cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.

Have you had any experiences with PTSD since cancer? I'd like for this blog to become a forum to help those going through something similar, so please comment!

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."-D.H. Lawrence

hair today more tomorrow

hair growth update, because I'm sure you are dyyying to know:





Notice the eyelashes! I've still been wearing my wig, as I'm still quite self concious, but once it gets to Mia Farrow length I'll retire the fake hair for good.

My first post-chemo PET scan was a couple of weeks ago and I had terrible anxiety. Upon moving back to SF I was hesitant to start projects or emotionally invest myself in anything, for fear of my world crashing down again due to cancer. I'm agnostic, but I prayed while I was on the table. Please, please give me some time to enjoy life... even if it's just for a few years.

I figured they wouldn't call if the results were normal. The day after, I got a message from my onc's assistant. She sounded concerned and asked to call back as soon as I could. PANIC. Oh, holyfuckinggod was I scared. NOOO, not yet.

It turns out she called to tell me everything looks normal, and just wanted to say hello. Whew! Good for another three months. How do you deal with scanxiety? I feel as though I was paralyzed until the results came. The wait really is the worst...

Ok, I hope I offend you with this one:

What are Michael Jackson and Farrah Fawcett getting for Christmas?

.
.
.

Patrick Swayze.

Oooh no she didn't.

el jay cross-post

Just a few pictures of the new room. Moved in Sunday. It's fascinating, how posessions can reaffirm one's identity SO strongly. You'd think that having your stuff packed away for a year and living elsewhere would somehow solidify your own self awareness, but au contraire! I felt lacking, I felt lost. I couldn't quite put my finger on it, but as soon as I unpacked my knicknacks and books and clothes something clicked, I felt like Kaylin again, capital K, not cancer ass-kicker or patient or whatever. Just Kaylin, and I like this.

Grandma's cigar box and a clay skull sculpted freshman year.

my gents are happy to be out of that stuffy cardboard box.

12x12 living space SLASH sewing studio, not quite sure how I will make this work...

Accidental picture funny face.

Fearlessness isn't a lack of fear, rather, it's a mastery of fear. I'm not afraid of much anymore. I am slightly afraid of cancer reccurance, if only for the inevitable decision I will have to make, but I am most certainly not afraid of death. Or pain. How many people, very honestly, can claim this at 24? I am content with the life I have lived because I've tried my very best to be an honest and passionate woman. I am broken, mentally and physically, but I'm confident that I'll adapt and overcome. Most importantly, I am happy right now. HAPPY. I will never ever ever ever EVER subject myself to the horrors of chemo and radiation and debhilitating surgery again. I gave it a sporting try but now I'm done. I am, um... master of my domain.