Wednesday, September 9, 2009

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:

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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.

19 comments:

POD said...

Where is planet cancer for middle aged people? Or is cancer just a given for geezers?

I love your hair. My hair is also fabulous so I'm not as jealous as I might be not having a planet of my own.

What do I have to do to get NPRs attention?

Kate Burton said...

I was wondering if you had heard the name drop. I think they did a good job and I didn't even get dropped. Let's see if you gets lots of traffic and adoring fans.

POD said...

HIVsterical!

kaylin marie said...

HIVlarious.

If NPR allows more people to find my story and maybe find some comfort in it, then all the vomiting and blood and guts have been worth it!

Anonymous said...

Not a dream, but a recurring real-life memory that takes my breath away: thinking of my sixteen-year-old self hearing from my oncologist, "You look like Mr. Clean".

How did I take that? Self-administered dilauded is a magical thing, I guess!

After the FA interview, I'm one of your new adoring fans. This is as close as I've come to realizing my morbid dream of only being friends with people who've had cancer.

Katie Taft said...

Dreams! Oh my god, totally nauseous dreams. I usually have something filling my mouth, rocks, popper beads, even poi, yes poi, at the wedding to my ex-boyfriend in hawaii, he wore make up in the dream, i didn't.

And there is almost always some kind of physical obstacle, a cliff or a wall of fabric that I have to climb to get myself out of wherever I am, and I can't and everyone is mad.

And it does stick with me all day, I can still taste the rocks from last night, got any Zofran?

kaylin marie said...

Katie, me too! always obsticles, usually me going blind and stumbling around. preceeding the hole in my chest dream, I was blind and struggling to get around my room, and a hot iron fell on my body and then to the floor causing a fire. My dreams are more traumatic than the actual cancer, geez! At least there are others going through the same thing :)

CJ said...

I heard about your blog on NPR. Facinating! I recently had a family member diagnosed and have found the reading about others experience is helping me cope in my own strange way. I was wondering if you could post some more on any lasting side effects of the chemo that have occured due to the treatment -- maybe I should rephrase it as after effects instead of side effects.
You seem to be a strong & courageous person & I wish you many healthy years here on earth!

Lauren said...

i LOVE your hair... i can't wait for mine to come back because i really, really want to dye it different colors.

i've been having a recurring dream/nightmare (not nearly as bad as yours) that my best friend and i have a HUGE blowout fight. he's also an old boyfriend, and i think the dream stems from the fact that he recently started a new relationship and was afraid to tell me since i've been "sick." but yeah... i've been having this dream about a huge terrible fight with him, and i wake up in a cold sweat every morning afraid that it actually happened.

i also have really trippy dreams when i take ativan - too many colors and lots of confusion.

again - awesome hair & insurance is shitty. i have to stay a full-time student (even though i'm concerned i won't be able to even go to class a lot of the time) just to keep my coverage. laaaaaaame...

Becca said...

hey chic, sorry for leaving an irrelevant comment on your blog, but I'm gonna be in San Fran in a few weeks (oct 14-ish)
you still in SF? Care for a coffee meetup sometime?
holla, cynnycal@yahoo.com

Ellen Kelly said...

I hear you about the port - I confidently skipped that chapter in the "Cancer Guide" they handed to me as I entered this gruesome Cancer Nightmare Ride, thinking I would not need that. 39 and otherwise healthy, my veins could handle the AC &T, right? Well, not exactly. I too, felt squirrely about having this "thing" under my skin, and this tube inserted into an aorta. WTF? The absolute worst part was tasting the saline and coumadin before every treatment as they flushed the port. I still get clammy thinking back...Then, I requested it to be removed the day after I had my last treatment - well, they didn't put me far enough under, and I opened my eyes on the table only to witness the extraction of the entire contraption. I was locked in a real-time nightmare - I couldn't speak yet (still in a bit of twilight), but now can never "unsee" that vision. No, cancer is NOT funny, NOT funny at all.
I am still NOT LAUGHING.....

ThirdGen said...

I heard the NPR segment and got busy with other things and forgot (or chemo-brain forgot) to wander this way. A link from a link, from a link from a link (I think) got me here completely separately.

Cancer itself isn't freekin funny, but some of the things we endure around the treatment thereof, ARE. How else can you deal with some of the things we go thru in order to live another day? Projectile vomiting isn't funny while you're going thru it or even the week+ after that your ribs hurt, but realizing later that you nailed a nurse-from-hell's shoes, IS funny. Or realizing while you're barfing for the fourth time today that you really do have a bit of ADD because you've gotten bored in between heaves and are trying to figure out what the bit in the bowl are that you've urped back up.

Humor is the only way for me to get thru it and survive. I don't always succeed, but I certainly try.

and POD---I've found that we're in a no-man's land of support in the 40's and 50's for cancer patients. We're not "young" anymore, we're not "elderly", we just "are" and no one knows what to do with us. Apparently someone forgot to coordinate with G-d and figure out that yes, in fact, we DO get cancer at this age. Apparently we're not as loud as the young'ns!

I *love* the additions to the names---HIVsterical...absolutely! I've used cr@ptastic to describe those LOVELY moments, whether it is when they can't find a vein or the anti-nausea meds "don't seem to be helping" or "we're just going to have to try again" (what's this WE stuff?!).

ok, not kidding, the wv word was MRSA...for a cancer blog?!?! sheesh!

kaylin marie said...

You're right, cancer is not all that funny, but irony sure is. And embarassing moments. Comedy and tragedy go hand in hand...

Amber said...

i TOTALLY have enjoyed your blog. My cousin posted your link on my page and it IS HILARIOUS! What a great pick-me-upper :)

Goodluck in your fight!

Tony said...

My wife heard about you on NPR. We looked you up and it's nice to see someone going through the same things I have... ok. not nice. You know what I mean.

I'm a 27 year old, former marine, former runner, former climber and (thank God) still a drummer. Went to college after 4 years of service and never looked back. Playing drums. Living life.

Age 25. Bam. Leukemia out of nowhere. I was actually able to finish my degree after my stem cell transplant but am dealing with ridiculous side/after effects. I got married in May to a very strong, loving lady who decided to be in the shit with me for better or worse.

I will cut this short. I hope this comment doesn't make me sound like a D-bag. You'd never know I was in the military if you met me. =) I'm typing this with one hand as a 17 gauge unbendable needle is in my other arm. Look up photo-pheresis.

I am so looking forward to listening to your npr segment and catching up with your blog. I hope I get to talk a lot with you too! Btw. I'm on medicare/medicaid. There is much to converse about.

super surgical said...

Apparently NPR mentioned you or something.

Someone mentioned Saline? I ♥ that stuff :p I know odd right...?

I found your blog searching around on dogpile for "Mix Tapes".

They way dogpile works is it opens the link right up at the text relevant to your search. So I was shocked when I scrolled up and read all the cancer stuff.

I ♥ your styles & has a lot of hopes for you.

I will be spending the day reading your blog and figuring out what your "Mix Tapes" are all aboot. I also read that you are fashion savvy and make your own stuff :)
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about your photo: http://tinyurl.com/ydjq8ef

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the oncology nurses are the greatest, most caring people in the world!!!

Elliott Broidy said...

Oh I hope everything became okay!

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