Cancer is Hilarious.

what happens after cancer?

2012-01-26T19:25:00.001-08:00

Symptoms of PTSD

Symptoms of PTSD fall into three main categories:

1. "Reliving" the event, which disturbs day-to-day activity

Flashback episodes, where the event seems to be happening again and again
xRepeated upsetting memories of the event
xRepeated nightmares of the event
xStrong, uncomfortable reactions to situations that remind you of the event

2. Avoidance

xEmotional "numbing," or feeling as though you don't care about anything
xFeeling detached
xBeing unable to remember important aspects of the trauma
xHaving a lack of interest in normal activities
xShowing less of your moods
xAvoiding places, people, or thoughts that remind you of the event
xFeeling like you have no future

3. Arousal (heh)

xDifficulty concentrating
Startling easily
Having an exaggerated response to things that startle you
xFeeling more aware, hypervigilance (to health issues)
xFeeling irritable or having outbursts of anger
xHaving trouble falling or staying asleep

You might feel guilt about the event (including "survivor guilt"). You might also have some of the following symptoms, which are typical of anxiety, stress, and tension:

xAgitation or excitability (these next 5 only happen in hospitals)
xDizziness
xFainting
xFeeling your heart beat in your chest
xHeadache

I find that most PTSD information out there doesn't mention cancer at all. Perhaps because 30 years ago the survivorship for agressive cancer was much lower, or age skewed more towards the elderly, or there aren't enough cases to merit any research. Or no one cares. I'm sure it depends on the subjective experience-- how threatening the cancer was, how drastic the treatment, a person's predisposition for anxiety, genetics, etcetera. The only solution to PTSD: a shit ton of therapy :)

I mention this because most of my week has been spent in NY City hospitals, and my god. my. god. It's a whole different type of crowded. It's like the airport in a snowstorm. It's every anxiety I could imagine. I sat on the dirty floor in a packed room for 3 hours waiting for my prescription. It's a lot like I imagine Ellis Island felt like; tons of helpless people stuck in a tiny dirty room, no one speaks english, and everything smells really... funky. Bad funky, not good funky. Going from insured in CA to uninsured in NY is like Dorothy going from Kansas straight to the second circle of hell (my favorite circle btw).

tl;dr: I didn't think this part through very well. because I avoid hospitals. because I have a little ptsd problem. see what I did there?

look i drew you a map

2012-01-20T22:30:00.000-08:00

I've just looked through the last few years of entries. It's something I do very rarely.

life has been hard these past 3 years.

Thankfully in my life there will always be family, friends, iceman and ukeleles.

updates from the babe in toyland

2012-01-06T12:03:00.000-08:00

It has been confirmed that I will have a job until our A/W12 Show this February.

I'm not sure I could've lasted longer anyway, as much as that breaks my heart to admit.

After this I hope to devote more time to our comic and YA cancer advocacy, and perhaps freelance writing to pay the bills. Any suggestions? What should I pursue?

I've been having severe hip pain lately, much more than usual; I think it's the joint. I know several people who suffer from avascular necrosis after radiation, and am concerned it is this. I was able to sign up for HHC discounted medical service here in NY, so I will be seeing an orthopedic oncologist next Monday, after spending all yesterday in the Bellevue ER. For now I'm taking an increased dose of pain meds, although it's difficult to work when they make me so groggy. I often find myself trying to communicate, searching for a word that just won't come out. It's embarrassing. I hate opiates.

I'll miss the BJ team; they've become like a family to me; an overworked and overstressed but pizazzy family.

Here's a picture from our Xmas party last month.

betsey quit toying with me!

i am here, where are you?

2011-12-21T19:48:00.001-08:00

today has been hard.

Since October my work-week has averaged 60-70 hours; I'm unable to take breaks/lunch because of the tremendous workload. I am paid (an embarrassingly) flat weekly sum as a freelance assistant designer for Betsey Johnson. This Monday I worked from 9:30am-2am, and on Tues had to be in again at 9:30am for our line review. This is not uncommon.

I've developed a cold that seems to linger melodramatically, and no longer have the privilege of free time or time alone (two very different and equally important things). I also find it hard to accept the severity of the industry-- everything must be done yesterday at any cost, and if you fuck up, it's your head on the neon-leopard-print platter. Fuck up = accidentally ordering a 16mm charmeuse instead of 19mm. Digging through an office load of trash to find a printout of a BOOT because your boss forgot to save the image to her desktop. I love the job but it's ridiculously stressful. And no health insurance, of course.

At times like these I wonder... whatthefuckhasmylifecometo?

And I realize that virtually no one I work with (except Betsey herself) has an iota of understanding as to what it's like to be a cancer survivor, to accept death, to drown in chronic pain, and try to continue on as "normal". I'm not normal, I'm another species. I can't relate. You can't relate.

Lately I've been mourning those few people I've met that could relate, and that made me feel connected. Devon, for instance. Diane. And this chap, Justin. Remembering him, I revisited his old blog and rediscovered his writing. I was still going through treatment when I started getting to know him, and I couldn't grasp his jaded-yet-reflective veteran perspective. Now I get it, and now his words sink deeper than ever.

http://superfluke.typepad.com/

here's something he wrote me that rings especially true right now, and brings tears to my eyes:

"I hope the best for you. I've been through a lot over the past five years of treatment and ICE was by far the worst of my experiences. How much of the bone are they looking at? The hip, right? I've been reading some of your blog. It's always weird for me to hear people say things like this but at the risk of sounding bland and uninformed... I love your words. I think we all get to a point when we think we are professionals and know all there is to know about this disease and it's effect on our entire beings. In my case, I have made this disease somewhat of a profession. However, I am always learning something new and regardless of how many times I've heard the same words from so many people our age - it is still encouraging to know that I'm not alone here. Whether it be my head in the clouds, my heart in the pit or my soul in the darkest regions of what seems to be the end of all creation, I know someone is floating close by. A blip on a map perhaps - but at times a beacon to find my way back to the mother ship. This probably makes no sense what so ever. But in plain English, I'm glad you still express yourself. And I'm grateful that I can witness that expression. Currently, I am sitting in the lobby of the National Institutes of Healthin Washington, DC, waiting for my cab to take me to the airport. From there I fly to Dallas, TX where I will stay for a week working 14 hour days on a fashion shoot. Next Saturday I return to NYC for the first time in four weeks to drop of some equipment, change out some clothes in my bag, sleep in my bed for a night and then return to DC for a week of radiation. It can be cold and dark and lonely out here. And every day is a fucking battle. I hope it's not too crazy that I write you. Feel free to do the same."

So Dusty, I am picking up where you left off in 2009, here in brooklyn, here with 14 hour fashionable work days, here trying to survive. I wish you were still around. Here's proof that sharing ourselves through words can reach far beyond our own lives.

{This blog seems to have become more "letters to dead people" than "cancer is hilarious". Do I relate more to the posthumous, or is it that posthumous writing grips us more intensely, knowing the mind that made it is gone forever?}

Suprise Disease

2011-12-13T17:26:00.000-08:00

Listen to this haunting song by my friend & soul-mate-poetess Elaine Kahn-- I'm glad my suprise cancer inspired something so good.

surprise disease by horsebladder

2011-12-12T15:25:00.000-08:00

I'm sorry for my lack of posts.

I've been working 70 hour weeks for the last 2 1/2 months.

I hope to pick up blogging again soon... there's so much to tell!

more soon.

faking illness cheapens mine.

2011-11-05T09:07:00.000-07:00

I've recently found out that a fellow cancer blogger, who I have mentioned before, has been thoroughly faking the whole thing. I'd recently sent her a gift but hadn't heard from her in a week or so. She said she was in hospice and I thought she had died, quite frankly.

What makes me nauseous is that she used my blog as a textbook on how to have cancer. She studied my blog diligently, as well as many others. She took advantage of dozens of real cancer patients like you and I.

I am torn as to whether to take down CIH. Does the potential to help outweigh the potential for misuse and pain?

Here is a link to her blog.

I skyped with her, sent her texts and gifts. I treated her like all of my other cancer friends who were dying, with the utmost compassion and respect. We even talked about cancer frauds -_*

A quick google search turns up many more. CANCER IS TOTALLY TRENDING RIGHT NOW.

look here:

ps... unfortunately I am not faking.

beautiful passing

2011-10-04T20:03:00.000-07:00

It is with a heavy heart that I announce another cancer friend's death.

This one is hard, because I've never met another cancerite who reminded me so much of myself; I loved her from the moment I met her last February through a mutual friend (you MUST meet Diane!). We bonded instantly, and when she had a recurrence (in the form of a rash-- weird, right?) we talked on the phone for hours about how difficult it is to be young and ill and to have your future snatched so suddenly out from under you.

Let me tell you of the awesomeness that was Diane: She was a historical fashion dynamo which none could rival. She knew her hemlines, decades and artists, a jabot from a cravat, and I looked forward to gushing with her about fashion's obscure geniuses. She published a magazine called Zelda (presumably inspired by Fitzgerald) about 1920's deca culture, of which several copies are still strewn about our house. Even though she was only 5 years older than me, I looked up to her as this monumentally beautiful, stylish, funny, intelligent, accomplished woman. She had a black bob, just as I did. It was like looking in the mirror. And, even when she had cancer, remission, and recurrence... she never stopped working towards her passions.

I cry as I write this because I am so utterly sad I wasn't able to know her better.

Diane died suddenly last week after complications with pneumonia, which was due to chemo and her lowered immunity. She battled aggressive breast cancer and recurrence.

The day I found out was the day before my fashion show, so, in my head, it was dedicated to her. Afterwards I spent time with her good friend J, and D, at our home. We talked & drank cider well into the night. Diane had told J that I was of great comfort to her, an inspiration, and that touched me deeply, because I'm not sure she would've ever said that to my face. These things are hard to talk about.

So, Diane Naegel, I am honoured to have known you.

2011-09-26T19:18:00.000-07:00

I'm just going with the flow.

it probably won't lead me to happiness

but it'll lead somewhere, at least.

OT

2011-09-13T15:52:00.000-07:00

here's some thing I helped do.

rachel antonoff spring 2012

rachel antonoff spring 2012

playing [cancer] detective

2011-09-05T20:37:00.000-07:00

have you ever done this? Gone through every seemingly insignificant reason why you could've possibly gotten cancer, every other illness in your life, how they might be linked, because a part of you feels like your doctors don't know shit, or don't give a shit? Because you want answers that no one, save yourself, has the energy to find?

I do.

List of things wrong with me:

1. I was born 2 weeks early at 5 lbs via c-section.
2. I had asthma as a child.
3. I've had eczema and various allergies my whole life.
4. At 14 diagnosed hypothyroid, hashimotos's disease
5. At 16 started getting chronic sinus infections
6. At 16 my lymph node on neck swelled up for weeks like a golf-ball (9 years later cancer is found in the same exact place).
7. At 20 diagnosed with chronic depression & BPD, which notably heightened at the same time each month.
8. At 20-23 suffered fevers and sinus infections monthly, as well as (or due to?) insomnia & stress.
9. flashes of pain start in pelvic area & are misdiagnosed as ovulation pain.
10. At 23- 7.8 cm tumor found, Ewing's Sarcoma left pelvis diagnosis
11. At 25- lymph node in neck swells up like in high school. dx thyroid cancer
12. At 26- sharp abdominal pain and heavy irregular bleeding are explained away as "your period" even though I've been in premature menopause for 3 years.
13. At 26- ovarian cysts (assumed benign) found on both ovaries.
14. Also found- sinus cavity cysts deemed insignificant in CT scans & left lung spot

**I left out all ailments related to cancer treatment, which is a whole 'nother beast.
****also omitted "things awesome about me", which would take up too many pages and probably make your eyes sore, or just your ego.

Currently:

-Ear/throat/tonsil/sinus ache. a cold? or EAR CANCER?
-Abdominal pain from cysts & free fluid.
-The usual chronic joint/muscle/bone pain.
-I'm nightmaring again. [PTSD rears its nasty head when you're the most stressed-- like today, I was slicing prosciutto at the deli, and the cut was uneven & slid, my pinky sliding with it. It wasn't too deep but bled A LOT, filling up my glove. I near-fainted and had a flashback of my sliced throat and that nerve pain... such a specific pain. A queue soon formed of disgruntled yoga-moms waiting for their post-workout-cheesewheel, so I sealed it with superglue to stop the blood, slapped a hello-kitty bandaid on, and went back to work.] But I digress.

I've come home from work now and can't stop thinking about my earache, cysts, throbbing pinky finger, problems problems problems. Always fear looming because I've gotten too attached to living again, having lived another full 3 years, working to the bone in hopes of future happiness. Wondering why it is that I must work so much harder than others... just to stay alive.

Anyone have a clue?

to assure you that I am not dead yet

2011-08-25T19:06:00.000-07:00

or that someone has murdered me and is posing as me in text form, which is what my mother assumed.

I have just been so damn busy and broke. I go to sleep as soon as I hit the floor (because up until now I couldn't afford a mattress). Unfortunately there is no energy to wax poetic about the specialness of life, have a relationship, or f... un. fun? What does that mean again? Someone please save me?

Things I have been doing:

-interviewing 2 or 3 times a week. Everyone loves my work but won't hire because I haven't enough official experience. Apparently the school of hard knocks does not count.
-unpaid internship with R. Antonoff, which is surprisingly fun and gratifying, but kicks my ass.
-ehm tee vee filming and meetings, working with their ACT program to promote YAC awareness.
-finding a publisher for our comic (Last Gasp!), discussing a contract, and finishing the preview issue with Jon.
-getting scans, which showed no sign of disease other than an iffy lung spot and many large ovarian cysts thought to be benign. All kinds of pain from all kinds of work. Arthritis in my right hand from illustrating/writing/sewing.
-saw the McQueen exhibit on closing night, which was a transcendental experience.
- met Betsey Johnson yesterday and had a great interview, but still waiting to hear back. (!)
-creating a lesson plan for a Saturday fashion class for 7-12 year olds I will be teaching in September through November.
-kickin ass and taking names, but then forgetting them because I am too exhausted.

a few candids to prove I'm alive and relatively well:

these days I spend a lot of time waiting underground.

...

what's new with you?

2011-06-23T21:57:00.000-07:00

On Wednesday I had 2 interviews and handed out resumes door-to-door, soliciting myself unmercifully (we will omit the ER bit).

On Thursday I helped Ambit set up their trunk show at End of Century.

On Friday I went to Planned Parenthood for a check-up, which is very much like waiting at the DMV.

On Tuesday I had 3 interviews in one day. In 5 hours I need to get up and get ready for another.

unpaid internship= check. http://rachelantonoff.com

blisters & bruises from lugging my 20 pound portfolio around Manhattan= check.

things looking up= /halfcheck.

2011-06-16T19:29:00.001-07:00

so much has been going on the last few days & I will provide a full update soon, but I just wanted to say...

to the lovely readers that reached out to help, thank you SO much, it warms my heart and makes me want to return the love every day. I'll answer emails as soon as I can. I'm going to PP for a check-up tomorrow & will let you guys know how it goes.

most often I blog to vent, and I realize it must seem like my life is one stressful disaster after another (which is not entirely untrue), but please know that I'm very, very happy to be living my life.

more soon.

2011-06-13T13:48:00.000-07:00

I'm having a mondo-crying fit right now.

I don't understand how I keep going on interviews and keep failing to land a job.

Even minimum wage jobs for which I've had years of positive previous experience with the Company, i.e. Crossroads, have turned me down. RETAIL JOBS ARE TURNING ME DOWN, not even the design industry.

I DON'T UNDERSTAND.

Is it the gaps in my employment history from having cancer/being in college? Is it because I'm honest about being in remission for cancer? Does that scare you, employer? Is it because I only worked at Bloomingdale's for 6 months during the summer, and Goorin for 8 months before they laid me off?

I really... I'm really discouraged.

I will not be able to pay for July rent. My credit line is maxed. I have $42 to my name. I have an interview on Weds that seems promising, but it's for an unpaid internship.

I'm doing the best I can, I'm showing up articulate, positive, absolutely willing to work, honest, with a resume and portfolio I poured my heart into and a smile on my face.

the reality? reality doesn't care much about me or my problems.

/rant.

live fully or surrender

2011-06-10T16:17:00.000-07:00

I'm feeling really down today.

I went to visit an old school friend this afternoon at his studio, which was great; I forgot how much we had in common and I've always admired his knowledge of proper clothing construction. He is the professional I wish I was. So we were catching up, and of course it was requisite that I talk about my cancers. I explained the neck surgery, the chronic pain, my medication regimen, how I really want to find a job that offers health insurance. The documentary, and how I hope it will somehow help others. All with a casual insouciance that no doubt disturbs people who don't know me well. I may as well have been talking about a paper-cut.

But under all of those flat recitations there was a tightening of my chest, my eyes started to water, I felt a pain bubbling up within myself that was definitely NOT the Thai curry I was eating. Here's the comment that did it, and if you are a cancer survivor you've heard it countless times: "Wow, you're so strong! You're such a badass! Most people can't even handle normal life stress, let alone cancer". I know, I know. Believe me, I didn't choose to be a badass, it just happened.

I always think to myself, "If you had cancer you'd have done the exact same thing", but I never say it because people unanimously reject that statement. "Oh no, I don't know what I'd do!" Let me tell you: you'd do what you need to survive, you'd bear your pain and try your best, no matter how ugly and messy it gets. Everyone has to do it at some point. Cest la vie, and shit.

I'm not a badass, I've just had some bad luck. And this is why I'm feeling down today.

I don't want any more back luck for awhile. A central struggle for me since moving here has been the fear of cancer returning, just as I've made the life-changing decision to continue on with my career aspirations. I have hip pain, I fear an Ewing's recurrence. I have ongoing digestion troubles, I fear colon cancer. After you have two primary cancers, nothing is improbable. The rain-cloud looms incessantly overhead. Sometimes it chokes me.

I am afraid only because I am happy, because I have something to lose now, and to be cancer-free seems too good to be true. My instinct is to refrain from savoring the freedom and happiness I feel due to a sinking feeling, deep inside, that I must prepare myself for the next big storm. It's a struggle to get past this.

I will close with this, from fellow cancer blogger Cara/growthandtransition, whom I've been following lately and admire greatly for her openness:

"This tiny bird reminds me, still, that Courage has a face - it doesn’t come in feats of strength, but in fear and longing, in pain... I’ve come to the conclusion that we need not differentiate circumstance, only response. One person’s measly splinter may be another’s downfall. Regardless of experience or level of pain, everyone must make a choice to live fully or surrender."

(full entry here, check her out.)

homebody

2011-06-04T18:34:00.000-07:00

just a few of my favorite views around the new apartment:

kitchen window looking out into a vacant lot, which is actually a rare wonderful thing.

growing up I had a very gender-neutral bedroom of yellow walls and blue carpet. I have been repairing the damage ever since.

found on the subway, keepin it just in case. magnet is my grandmother's old, it says "never too thin" but I think the bear has body dysmorphic disorder.

and yours truly trying to bear the humidity.

oh yes... I am feeling much better, save for a few aches and pains. I made an apt. with my local planned parenthood though, which does cervical/pap screenings for sliding scale fees, just to make sure everything's nothing. if you know what I mean.

p.s. I really wish this blog was formatted for big beautiful pictures

tmi know.

2011-06-01T14:21:00.000-07:00

You should skip this post.

I'm really only writing this down because I want to keep an accurate log of my symptoms and random health hiccups.

I think I have my period for the first time in three years of chemo-induced menopause. Not just spotting, but painful, thick bleeding and sharp flares of pain in my ovaries. Normal?

I'm kinda thinking I should see an obgyn just in case. hm. Find a free service here, or wait til August when I fly back for my scans?

what is my body trying to tell me?

book club

2011-05-26T18:40:00.000-07:00

I'm blogging more because I have no one to talk to here.

spending my nights in quiet solitude, which is so refreshing after living at the beach house and never having a minute to myself.

finished Goethe's The Sorrows of Young Werther and collected poems

now starting the Bell Jar again... this is perhaps the 5th or 6th time I've read it (typical, right?). I figure it's fitting for a lonely summer in New York. The only other book I've read as many times (once a year practically) is Jens Peter Jacobson's "Neils Lyhne", although I think I've grown out of his idealism.

I didn't have the energy or concentration to read during treatment, which is partially why we wanted to make a comic book. It's easy on the chemo-brain :)

have you read anything good lately?

oh yeah... my birthday is in 2 days; I will be the ripe old age of 26.

my heart soars on the streets of Brooklyn

2011-05-25T12:20:00.000-07:00

(via josh derr flickr)

So, I am here, fucking finally, after 2 years of failed planning, doubt, and illness getting in my way. I mean, it's still in my way, but from now on I'm going to be that rude bitch on the street that just elbows past it, never even looking back or apologizing, because I HAVE SOMEWHERE I NEED TO BE. So there.

(It's taken me a very long time to get to this point.)

I've had a lot going on lately. A documentary crew, which I am forbidden to speak of, has been following me since late April. They even filmed my flight here with iceman. It's incredibly surreal and exhausting. I'm doing this because I hope people will benefit from it in the same way as this blog; here is a girl you can relate to, whose had struggle and suffering and pain and is somehow stubborn enough to keep pursuing a dream, and most importantly, willing to let you into her life. Seriously, everyone is welcome. I invite you all to share my life with me. I feel it would be a waste if I didn't share it.

My health is stable right now. I'm currently on an oxycontin/codone regimen that works well enough. I'm not pain free, but I can get out of bed in the mornings. It does make me drowsy & I'm trying to get an rx for Nuvigil, which my doc said would combat the fatigue. Has anyone tried this? I worry that I won't have the stamina to work the normal 8-12 hour days required in the fashion industry. We'll see... I need to secure a JOB first, a task I am finding heartbreakingly difficult so far.

Keep trying, keep working, keep moving. Keep your chin up, kid. Many, many artists and writers that I admire struggled with countless rejections and few published works during their lifetime. The shared human experience is surprisingly consistent.

The comic is going well, I have left Jon with all of the final illustrations and we are preparing to finally send out backer prizes, yay! We are planning to release the 1st issue in conjunction with the airing of this "documentary series" who's name we dare not mention.

What else? I'm enjoying the beautiful weather and my working body, walking right foot, left foot, cognizant that I might not have the chance someday. Happy despite great faults. Hopeful to nurture new friendships and meet kindred spirits. and stuff.

that pretty much sums it up.

when everything is connected

2011-05-09T09:31:00.000-07:00

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...

2011-04-16T12:08:00.001-07:00

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

(Goethe)

environmental chchanges

2011-03-30T12:44:00.000-07:00

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

2011-03-24T20:25:00.000-07:00

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

2011-03-21T12:39:00.000-07:00

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.

2011-03-14T16:17:00.000-07:00

apt statement.

question.

2011-03-02T09:36:00.001-08:00

My fellow cancerites, bloggers, readers:

How do you stay strong enough to keep going?

blogaphobia

2011-02-17T17:41:00.000-08:00

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.

2011-01-19T17:57:00.000-08:00

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.

Kaylin: An Update

2011-01-13T12:57:00.000-08:00

My doktor switched me to methadone for my chronic pain.

Scary sounding, huh?

The thing is... it really seems to be helping! I started last week, taking 10mg 3x a day. No crazy side effects yet besides grogginess, but of course, it's too soon to tell. @__@

I already have more energy, and I suspect it's because I actually woke up PAIN FREE today.

Thanks methadone!

here's my hair 20 months post chemo:

An opportunity has been presented to me that would allow me to share my story, in intimate detail, with millions of people. Is this good? Will this benefit anyone? Is my life even interesting enough to share? Hm. If the answer to any of those is "yes", then I'll do it.

Kickstarter: An Update

2011-01-13T12:49:00.000-08:00

I am deeply humbled (and amazed) at the tremendous outpour of support we've received for this project. It reinforces the notion that we're doing something right -- something that will heighten awareness of the Young Adult Cancer community while simultaneously providing laughter and support. I am also REALLY FREAKING EXCITED!!! You'll be helping me focus on my health and creative output -- two things that I've been sorely missing lately.

I encourage everyone to keep spreading the word for this last week, even though we've reached our minimum goal. Every pledge helps us make it better -- I, for one, would LOVE to see this comic in full color!

Below is a picture of our workspace for the comic. We put up drywall to create a massive mood/story board to help us organize everything. Inspiration, jokes, working sketches, page layouts -- it all goes here. My sewing machines are even set up in the opposite corner! I look forward to sharing our entire process with you.

In conclusion: YYYYAAAYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!

2011-01-05T16:37:00.000-08:00

oh and p.s.-- if we don't reach our funding goal in the next 14 days, the cancer comic won't be published, and the hundreds of fellow cancer-ites & YA foundations I have on my mailing list will not receive this awesome, wickedly funny, free work of art. PLEASE PLEASE PLEASE, share our kickstarter page! I still have a tiny bit of faith in humanity, don't make me lose it.

p.p.s-- I plan on drawing Dev in for a cameo.

;)
He's still alive in my head & we're still on this journey together.

confessions of a cancer patient

2011-01-05T16:04:00.000-08:00

I've always loved confessional writing. From the very first time I read Sylvia Plath whilst in the scalding throes of puberty, to my current obsession with Joe Orton's diaries and Jonathan Ames' 2009 show "Bored to Death"... I've always found truth more interesting than fiction. Maybe it's a generational thing, maybe it's because my parents were so tight-lipped about their own lives and I needed something honest to relate to. I'm not quite sure. All I know is... I like reading about people's problems.

My guess is you do too.

I've been thinking a lot about Devon lately. He came to visit me here by the beach around this time last year. I played him some Velvet Underground, my go-to crowd pleaser, and surprisingly, it was all new to him. I was glad he liked it. [side note: Muse is playing on Pandora as I type this, which was his favorite band. I take this as an omen that it's permissible to write further...]

Devon is dead now. There's nothing entirely significant about this fact-- he battled Ewing's Sarcoma on and off from ages 19 to 28, his health slowly declined as treatment options ran out, and he died. We related to each other in ways that no one else possibly could, forming our own secret cancer club. We were both realists with a dark sense of humor, prone to depression, suffering immeasurably due to one stupid translocated chromosome. Here's looking at you, 22.

Devon was a bitingly truthful writer with an ascorbic wit, authoring essays that sucked the reader into his own personal hell of illness and the oft bitter loneliness that goes along with it. Not the most pleasurable Sunday reading, but important, I think, to the collective experience of humanity. Devon SUFFERED with a capital S-- more that I can even imagine. He removed his writing from Planet Cancer sometime before his death, so it is impossible for me to re-read his thoughts, mind, soul. You see, Devon was very protective of his personal revelations, and told me he didn't think most people deserved to read them.

He did something that I find absolutely terrifying- he left without leaving anything. Except, I guess, an impression on me. His confessions are lost to us. I regret not encouraging him more towards his end of life. I was not as compassionate as I should have been.

My point? Talented insightful people die for no reason all of the time. I repeat: NO REASON. You've got to create your own reason to live. And you've got to live as if everything you care about is dying. Because it will, eventually.

I never even took a picture with Devon, just this ugly grey seascape that we both shared for a small moment.

so... that was my confession for today.

oh yeah...

2010-12-27T13:39:00.001-08:00

I hope your Christmas was as fulfilling as mine in 1989!!

pain for the holidays

2010-12-24T13:58:00.000-08:00

Since I forgot to renew my opiate prescription before I left for the holidays, and since I am subsequently curled up in the fetal position at my mom's house unable to move from excruciating pain and withdrawal symptoms (watery eyes, hot flashes & chills, MONDO headaches, excessive yawning), I thought I'd post about pain.

Chronic pain. The thing that follows after cancer, but no one seems to talk about. The thing that plagues my everyday life, but doctors can't seem to figure out. Chronic pain is eating up my life.

Now, everyone's physiology and background is different. I only speak for myself. I'm sure there are miraculous people out there that go through chemo, surgery, and radiation relatively unscathed and untouched. Cancer treatment lite, I like to call it. If you fall into this category-- lucky duck-- just scroll on down. If not, let's share our experiences with chronic pain instead of masking them, as young adults tend to do in an effort to be "normal" within their peer group. Perhaps the more dialogue is opened, the more physicians and loved ones will be able to understand and help us.

My chronic pain seems to be twofold:

I have deep somatic pain due to scar tissue in my hip, where the tumor was, and right clavicle/shoulder, where lymph nodes were plucked during the Thyca surgery. This pain is dull, aching, and absolutely unrelenting. This is my main issue and the thing that compromises my quality of life the most. When untreated by opiates, as it is now, this pain consumes me-- I can't focus on anything else. I avoid physical activity completely. It just does not let up. It's maddening, I tell you.

[Scar tissue from radiation has also caused a myriad of problems for my digestive system and bladder... but that's another painful story for another painful day]

I also have neuropathic pain all over my body, though mostly felt in my joints, presumably from 8 months of chemo toxins damaging the protective sheaths around my nerves. This pain feels sharp, stabbing, and sometimes tingly. It's rather unpredictable-- I get sparks of pain everywhere from my chin to my toes. I also experience neuropathic pain around my neck incision, where nerves have been cut & damaged. The skin there is numb to the touch, but even gentle pressure creates a sharp pain.

To combat all of this I use daily opiates, light stretching, pot, and hot baths. The opiates, obviously, are the only thing I've found that allow me to live a semi-normal, semi-pain-free existence. Unfortunately, these have all sorts of drawbacks, including increased dependency, side effects (I hate the grogginess), and nasty withdrawl symptoms. Plus, they're pricey. You need insurance. You need employment. You need a functional body to stay employed. You need opiates. Etcetera.

Until now, I had no idea just how much I rely on those little orange pills to function.

Do you have chronic pain, even years after treatment? How do your doctors respond to your concerns? Have you found anything that particulary works for you?

Big Cancer

2010-12-12T12:23:00.001-08:00

This is why I'm generally wary of mega huge nonprofits. They tend to lose perspective.

Really Susan G Komen foundation? No need to go all diva on us.

Susan G Komen Foundation elbows out charities over use of the word "cure"

"In addition to raising millions of dollars a year for breast cancer research, fundraising giant Susan G. Komen for the Cure has a lesser-known mission that eats up donor funds: patrolling the waters for other charities and events around the country that use any variation of "for the cure" in their names.

So far, Komen has identified and filed legal trademark oppositions against more than a hundred of these Mom and Pop charities, including Kites for a Cure, Par for The Cure, Surfing for a Cure and Cupcakes for a Cure--and many of the organizations are too small and underfunded to hold their ground..."

"Cupcakes for the countermeasure" just wouldn't fit on the banner. jerks.

Happy Fun Exciting Time!

2010-12-03T12:54:00.000-08:00

I am thrilled to announce the launch of our kickstarter project: Terminally Illin'- A Cancer Comic Book.

www.cancercomicbook.com

Long-time followers will remember a post I did in 2008 upon inception of this idea, inspired by the irreverent fighting spirit of comic heroines like Tank Girl.

I want this comic to be an amalgamation of amazing, engaging artwork, hilarious storylines, and honest, informative commentary on the YA cancer experience. There will be writing from this blog, and other guest contributors. I want patients to be able to read it while going through chemo, and be transported into a fantastic world of kick-assery and (in our own sly way) hope.

I want to be able to give this work of art for FREE to any cancer patient/survivor that would like it.

Please help me spread the word! Let's make this happen!!

If you want to contribute/want one sent to you, email me at kaylinmarie@gmail.com

CHEERS!

I SWEAR I'll start making this blog less depressing.

2010-12-01T15:58:00.000-08:00

eventually.

I ran across a great in-depth study on YA oncology, found here. Of particular interest is the paragraph on psychosocial effects of cancer on those only just entering the arena of adulthood:

"Perhaps the greatest difference between patients in the adolescent/early adulthood age range and other ages is in supportive care, particularly psychosocial care. Adolescents and young adults have special needs that are unique, broader in scope, and often more intense than those at any other time in life. Cancer therapy causes practical problems in social arenas. The dependence of adolescent and young adult patients on peer-group approval poses greater challenges when confronted with a diagnosis of cancer. Self-image, a critical determinant during this phase of life, is compromised by many of the adverse effects of therapy, such as alopecia, weight gain or loss, mucositis and dermatitis (acne, mouth sores), bleeding, infection and contagiousness, susceptibility to infection and need for isolation, impaired sexuality (intimacy, impotency, tetratogenicity risk), and mutilating surgery. Other challenges include the loss of time from school, work, and community and the financial hardships that occur at an age when economic independence from family is an objective. A wide range of financial challenges occurs in the age group. In addition to the health insurance challenge described above, there are the usual limitations in affording life, much more once confounded by the costs of cancer treatment. There may be guilt if not attending to these responsibilities or stress and fatigue if trying to keep up a semblance of normal activity. Partner relationships are tested by the strain of the cancer diagnosis and its therapy. Whether a partner stays in the relationship is challenged by fear of relapse or infertility and may be influenced unduly in either direction by guilt or sympathy. Those contemplating having children may fear passing on a genetic predisposition to cancer. Medical professionals are often poorly equipped to deal with the psychosocial challenges within the age group and are often stymied by the need in these patients to increase compliance, reduce stress, and improve the quality of life during cancer therapy."

dude, seriously.

the significance of threes

2010-11-26T14:24:00.000-08:00

They say luck, whether good or bad, happens in three's--

I've had three heartbreaking things happen in a short span of a week- all sandwiched between one magical trip to the Big(ish) Apple.

These three things have uprooted me emotionally, monetarily, permanently.

All three have been the decision of other people, directly impacting my life.

No wonder I feel helpless.

My life has been rather desperately reaching for something to cling to, for some small root to grab and take hold and secure me to more stable ground. The ground I cling to is far more fragile than myself- often just a future hope, a sliver of opportunity, a speck of a man. Perhaps all only ideals. Easily crumbled.

[In NY; a crooked bowtie means good times]

So, this Thanksgiving, which I almost missed--

I am thankful for the friends and family that remain steadfast- offering a hand when my ground is giving way, pulling me up from the rubble, time and time again. I'm thankful for the people who stay with me, through all of my misgivings and flaws, because of love. I fucking love you too, honestly, absolutely.

ok. No more bad luck, on the count of three...

.

.

.

one

.

.

.

.

two

.

.

.

.

.

.

three.

it gets worse.

2010-11-23T13:40:00.001-08:00

Just got a letter in the mail--

I've also been denied disability/ssi assistance.

so

there's nothing left to hope for.

no money left.

I don't know what else to do.

besides sleep.

A kick in the teeth, so to speak.

2010-11-17T11:44:00.001-08:00

I am on my way to an informational interview in New York right now.

I spent all my NY savings on rent after my 2nd diagnosis.

I applied for a SAMFund grant in September, naively thinking that they could help me with my goal of moving to NY.

I just got an email today saying that I have been rejected, because at the time I was writing my application essay, I hadn't finished treatment (this was during the RAI). So, even though I'm finished, I am disqualified.

I'm on the train and I can't contain my tears.

I really was hoping.

EDIT: this piece of wisdom has been bestowed upon me by the lovely Bekah:

FUCK Samfund. I've applied for the same grants, and they claim to reject me because I'll 'never be finished with treatment.' Since mine is chronic, it will come and go..

We create our own world with our minds -- you know this. Yes, you are allowed to be down and out, you are allowed to feel like the world will cave in. Life hits us fucking hard, but we MUST get back up.

Cry, throw things, get pissed. And then, shake it off. The world is still yours if you want it.

(I needed that.) And for the record-- New York was awesome; the people friendly, the food delicious, and the subways didn't smell (much) like pee. I'll get there despite everything.

Lesson #1: There is no seperation between life and death.

2010-11-11T16:46:00.000-08:00

It seems like everything was going so well before cancer #2. Graduation, a finished portfolio, Hawaii trip, preparations for the move to NY. Fuck yeah, I made it through cancer and now I will take on the world and make the life I've always wanted.

Now? Now I'm broke, scarred, and still here. I still have cancer. I'm stuck. I've lost momentum. I feel like a puny inert lump in space-time just waiting to die. Waiting out the days. Wondering if I'll be able to pay the bills. But mostly just waiting.

I really don't know how to continue life knowing I have cancer, just lurking around inside of me, waiting for the next chance to pop up and reclaim my body.

I have no answers right now.
.
.
.

I do, however, have super-kawaii cancer gifs

I'm glad this exists:

2010-11-08T19:15:00.000-08:00

I've just come across cancer survivor Andrea Coller's 2008 article for Glamour magazine. I found myself empathizing with her in many ways- especially her zero bullshit tolerance. She died in April of this year at age 29.

2010-11-02T14:21:00.000-07:00

My PTSD has been flaring up lately. I haven't left my room in days. It's like a wet blanket wrapping around you, blocking you from reality, suffocating you. Fear, anger, guilt. hopelessness. Sometimes I actually taste the chemo under my tongue, or feel sharp pains by my port, as if a needle is sticking me.

All of this free time is exacerbating things, I think. I have way too much time to THINK, but not enough energy to DO.

I keep waiting for some kind of salvation-- an SSI claim approval, or the samfund grant, or a job interview. Something to signal that my life has hope, a direction, and isn't totally going to shit because of cancer.

I keep waiting.

C and me, we're attached at the hip

2010-10-19T14:18:00.000-07:00

I had scans yesterday.

Despite having a total thyroidectomy, lateral neck dissection, and radioactive iodine, thyroid cancer is still partying it up in my chest cavity. Awesome! We's friends fo' life.

LUCKILY, papillary thyroid carcinoma grows very slowly, so it isn't an immediate threat to my health. I'll probably have to have RAI again in a few months.

I can live with this, it's cool. It's not Ewings. My problem is... the extent to which my illness is affecting my 20-something life. It's fucking shit up. I should be half-way to being the next Anna Dello Russo now but I'm stuck in bed in my tiny rented room in SF DOING NOTHING. At least, that's how it feels.

In reality, I am doing everything I can. I am taking supplements, probiotics, eating well, stretching, studying my industry, trying to keep up.

My problem is that I want too much. My dreams have always been massive. I've been brought up with the notion that if you want something, work hard and you shall receive. It's a nice idea but it's ultimately bullshit. So much depends on random circumstance.

Will I ever be able to set cancer aside and continue with my passion, my work, my life?

fuck if I know.

I hope so.

ladylove

2010-10-12T15:21:00.000-07:00

I love the women in my life. I keep them close!

cigar boxes: grandma's old
cancer teeth: made by rachel
1970's nudie box: made by mandalee and robyn
roses: from wray
medicinal marijuana: my own

Thanks everyone for the sentiments, if I haven't gotten back to you, I will soon!

Had a scan yesterday, and will have another next Monday. Hopefully everything is going as planned and I shall be declared cancer-free (again).

On another important woman in my life:

A new Ted Hughes poem about Sylvia has surfaced...

2010-10-04T17:11:00.000-07:00

I'm slowly feeling better.

follow me on tumblrrrr if you are so inclined.

2010-09-29T11:14:00.000-07:00

brief update:

In a few hours I go in to take my radioactive pill. I'll be quarentined for 48 hours.

I've been extremely hypo-thyroid since the surgery but have only felt its effects within the last week or so. At this point, it's a battle just to get my ass up to take a shower.

fatigue, random depression, foggy brain. thinking only in pieces, which are promptly forgotten anyways. can't really write or read. i wonder if this is what the onset of dementia feels like.

oh, and I CAN'T BURP. It is sooo painful, to the point that I don't even eat unless I have to. Built up gas that can't escape, constantly throughout the day, constant nausea.

all of this feels familiar.

hang in there, it'll be all better soon.

is this my daily dose of happiness?

2010-09-21T16:07:00.000-07:00

My doctors hope so.

The ubiquitous Prozac pill- do you recognise it? I have graduated from the green-and-white 20mg to the more formidable orange-and-blue 40mg. I like the new color; it reminds me of Karl's s/s 2007 pill dresses for Chanel. No doubt he designed the collection with "afflicted" society darlings in mind, but it would be equally fitting for any cancer-afflicted fashionista.

(feel free to gift this charm bracelet to me any time ^_^)

My history with antidepressants is a long one- I started having intense bouts of depression in my late teens/early 20's, presumably when hormones kicked in with a steel toe and sent my body and mind awry. I call these bouts "The Black Hole"-- it is exactly what it sounds like-- being sucked into an enormous vacuous hole of anxiety and self-worthlessness, drowning in it, feeling the weight of entire universes collapsing on top of you... the usual. Whilst in the hole I lose all of the grounding perspective I'd normally have in day-to-day life. I want to die at that moment, things are so painful. I'm well aware that it's all in my head. Over time I've learned to bear it, let it run its course like a fever, and in a few days I am usually feeling better.

These little pills are my daily bread. They help patch up the holes.

give a neurotransmitter a BREAK, mannn.

2010-09-17T16:04:00.000-07:00

I can't remember what it feels like to not be in physical pain.

Of course I took it for granted; it wasn't even there until I hit age 23. Now... I wake up feeling like something has hit me, an invisible moving vehicle that I happened to step in front of. The accident can't be reversed, no matter how tightly I shut my eyes and reminisce about past-me.

The only time I don't feel pain is while sleeping. This is ironic, because I have chronic nightmares- every night is an increasingly ultra-violent scenario, usually involving me being captive and trying to outrun my captors, and of course, a tortured death. The end is usually grim-- I am on the ground about to have my skull kicked in, or I am shrouded and noosed and pushed off of a parking high-rise. I mean, seriously, seriously grim. But I feel no pain, and right before the final blow, I awake.

I wake up safe and warm in my bed, in pain.

I honestly can't decide which state I prefer, awake or dreaming?

what would you prefer?

The Situation

2010-09-08T13:31:00.000-07:00

I let myself cry, and then I write. This is usually how it goes. If I hadn't been diagnosed with a second cancer, I'd be doing neither of these things- presumably, I'd be tying up loose ends and embarking on my very first cross-country-moving-adventure. But, let's not presume. Let's not think of the what ifs and perhaps maybe might have beens. Here are the facts:

1. I have papillary thyroid cancer that has spread to most of the lymph nodes on my neck.
2. Said nodes have been scraped out, along with my thyroid, parathyroid glands, and a bit of my trachea, which shows cancer involvement.
3. In 3 weeks or so, I will receive radioactive iodine treatment to take care of any cancer cells the surgeon left behind. My pee will glow in the dark. I will be dangerously radioactive. If you touch my skin, yours will burn. Seriously!
4. I am definitely staying here for awhile. I need to be monitored closely.

The surgery was supposed to be 3 hours but turned into a 9 hour affair due to the many surprises my neck provided. When I awoke and saw that it was 1:45 am, I was convinced the clocks were broken. Nope. Just me.

Recovery has been painful, but I am now able to eat soft foods and turn my head slightly. I have been taking advantage of this and eating heaps of ice cream. Here's a picture during my hospital stay, with the drains still in:

haaah, wait, here it is:

and here is a picture of how it's healing:

One of the first things I noticed about the incision was how beautiful and even my surgeon's stitches were- seamstresses would call this a blanket stitch. In this photo I'm still very swollen and unable to turn my neck or sleep on my side. lameness. Literally!

On this day of August twenty-ninth, 2010

2010-08-29T11:41:00.000-07:00

It is with great sorrow (and a fair amount of disbelief) that I announce my second primary cancer diagnosis.

This time it is papillary thyroid carcinoma- I have surgery scheduled for this Thursday. They'll be taking out the whole gland, plus any lymph nodes that are involved. We shall go from there.

The diagnosis comes just weeks before my intended move to New York. All plans are put on hold. I'll need to stay in California for close monitoring. There go my dreams again, off to the dump. Perhaps I'll get to reclaim them later, little lost treasures, just like last time.

It is almost two years- to the day- of my Ewing's dx in 2008.
Why are my cells so goddamn uppity?

It started with a cyst. A lump on my neck, right above the clavicle, about the size of a walnut. I thought it was a swollen lymph node. Upon biopsy it was revealed that the lump is mostly old blood from cappillaries in the thyroid gland, mixed with pus and lymph fluid- my body's futile attempt at fighting back.

So here we are, a lump, a second cancer, a postponing of life once again.

As celebration, or distraction, D and I went to the carnivorous plant nursery in Sebastapol.

deadly beautiful things.

Symbiosis

2010-08-12T20:43:00.000-07:00

This illustration is so... so symmetrical. I love how the roots sprout from the pelvic bone.

link

le coup de grace--

2010-07-23T13:06:00.001-07:00

The mood video for my thesis collection is done, skillfully edited by San Francisco’s own Michael Marzio. Had we more time and money, it would’ve been great to orchestrate a plot, but these hauntingly static dream girls will do just fine.

After-cancer is hilarious

2010-07-14T15:24:00.000-07:00

When the joke is over, and the applause have ceased, when does one... carry on? When do I let go?

It's been almost two years since dear old Ewing's entered my life. I have lost a lot of brothers (I say this because, for some reason, only my male cancer friends have died), and I have grown immeasurably, to the point that I don't even recognise the pre-cancer Kaylin. Now, having graduated college and thus far avoided recurrence, I have a chance to start fresh. Completely anew. I can move away from the dimly lit Kaiser infusion rooms, the memory of suffering, the old ties and past faults, onto a life (dare I say) without cancer.

A friend sent me an email a few months back, asking for advice. She had prepared herself for death, was comfortable with its immanence, had presumably tied up all of those loose ends within one's self. And then, a second chance, balloons and bouquets, be off on your merry healthy way! What. the. fuck. do. i. do. now?

The transition between death and the "second life" we've been given is massively confusing and distressing, almost as much as the task of readying oneself for death. I didn't really have an answer for her. I am only just dealing with this now. I had my senior year to focus on, and I dove into my work with a calculated frenzy, well aware that I was using school as a distraction.

Now, school is done, forever, and I have the task of rebuilding all of those hopes and dreams that I abandoned when I was bracing myself for a premature death. I really, really thought it would come back. Maybe it will. But... I've resolved to go on living as if it won't.

So, a cross-country move is in order. I'll be moving to New York by the end of summer, and hopefully secure an Assistant Designer position. Exciting times! I crave a stable job and routine after the insanity of the past few years. Here's hoping.

Here are a few pictures of a recent Hawaii trip, courtesy of my bf's mum. It was one of the happiest times of my life. I learned how to surf... something I've always wanted to do. Yes, my hip hurt, but it felt so nice to USE my body, to be active again. No pain, no gain. That's the understatement of the year.

2010-06-30T14:41:00.001-07:00

my hair is almost shoulder length, rejoice.

This is not a goodbye.

2010-05-15T20:13:00.000-07:00

My scans are "stable", whatever that means. NED after one year. Sometimes life does go on, isn't that odd? And what are we to do when we expected it wouldn't?

I've finally graduated with my BFA in Fashion Design and participated in the senior show this past May 7th. None of this means much out of context, but I am proud. I'm proud that I didn't let cancer fuck up my plans all that much. Now I have no plans, nor do I want to make any- I just want to keep expelling ideas and art until I croak. I'll float on and go where I go.

I am leaving this here for you.

Now that I'm looking for a real job I can't be as candid as I would like. People Google. Not everyone appreciates the hilarity of a deadly disease. I have to sensor myself. If you enjoy my writing please friend me on Livejournal at [girl_sets_fire]. On lj I can muse about weirdness, inspiration, the struggle with depression, SI, and cancer after-affects without worry of exploitation or being "found out".

This is not a goodbye.

Someone asked who the artist of "Vanitas" was, a couple posts down... his name is Fernando Vicente.

Here are some figure studies for his paintings:

Beautiful insides.

2010-05-02T12:10:00.000-07:00

Interesting article about the difference in survival rates of pediatric vs. adult patients. It mentions Ewings Sarcoma and ALL, among others. Statistics are so terribly enticing- I know I shouldn't read on, but I just HAVE to...

"...for teenagers and young adults like her, the prospects for survival had barely budged..."

*EDIT*

This link is MIA but if you search for the file "InTheirPrimeandDying.pdf" you'll be able to read it in google reader.

On coming and going, and finally arriving:

2010-04-28T15:48:00.000-07:00

Alicia Parlette- I had no idea she existed until I stumbled upon an announcement of her death recently. A writer living in SF who discovered she had sarcoma at 23, Alicia kept a blog about her cancer experience on the SF Chronicle web site.

Our stories are eerily similar. I wish I could have talked to her. The cancer struggle often goes on for years, on and off, and you've no choice but take it all in stride...

Here's her wiki:

en.wikipedia.org/wiki/Alicia_Parlette

Here's her blog:

http://www.sfgate.com/alicia/

On a lighter note, here are a few preliminary shots from my thesis collection:

It's a dress with a tumor; how cancer-centric can I get??

I've decided that if my yearly scan is clear, I'm going to retire this blog for the time being. It is what I wanted it to be- a candid documentation of cancer treatment. It's over now, and I doubt anyone wants to hear about my chronic pain every few weeks.

That said, I won't be a stranger ;)
.
.
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and if it's back... well, I'll get to take you on a whole new adventure.

2010-04-20T11:22:00.000-07:00

My birthday is in a few weeks... no, not my legal birthday, but the day I went from living dead to just plain living again. May 1st was my last day of chemo. It's the day I got out of prison... I can't believe it's been a whole year. It feels like just a few months have passed.

Yearly scans May 10th

Graduation show May 7th

Deadline for my senior collection garments: this Friday.

I have been working SO HARD. A whirlwind of work. Stitching still my eyes burn and my fingers bleed (literally!). I pulled an all-nighter, which is requisite college behavior, no? I was able to work through the night but my body retaliated soon after: fever and sweats, a debilitating migraine, and vomiting/heaving for the subsequent weekend. I'm still learning my body's limits, even a year after the fact.

Remember when I was bald? I don't. I can't even recognize myself, it's like I was in utero...

2010-03-25T14:15:00.000-07:00

I just want to say, very quickly, WOOHOO HEALTHCARE REFORM!!!!

I realize it will take several years to be put into effect, but I'm so happy this passed in congress. Sharing is caring, even if it's our hard-earned money. Healthcare should NOT be big business, in my opinion.

Here are a couple of links, spelling out the pros and cons in a simple and succinct way:

Pros and Cons of the healthcare reform proposal

5 key things to remember about healthcare reform

eye heart this

2010-03-19T13:45:00.001-07:00

I'm so high maintenance

2010-03-15T19:45:00.000-07:00

pain status: same as before, but now a lingering fatigue. I can sleep 14 hours and wake up tired. Also, my bones hurt. It feels exactly like the pain I got from Neupogen injections, like hot lava in your bones, burning and radiating out. It makes me restless, I want to stretch and shake the pain away. My fingertips are tingly. I yawn a lot. I've had a constant nausea for the last few days, which makes food unpalatable.

I've been having a tough time keeping up with life. This is a hard thing for a perfectionist to handle. Harder, harder, work harder to be normal. You must hide your physical pain, you've got to fight off your anxiety, you need to combat fatigue. Take your pills.

My collection due date is in exactly one month and one week.
work work work

My friend is dying slowly, but much faster than me. This is terrifying; to have a window into what will probably (50%) be your own unwanted fate. A flip of the coin. Every moment my mind is left to wonder, it wonders about death.

It crosses my mind frequently that this collection may be the last I ever design. So it's got to be good. It's got to be. perfect.

Anais Nin once wrote, "I postpone death by living, by suffering, by error, by risking, by giving, by losing".

I postpone death.

Lizzy Mercier Descloux

2010-03-10T10:48:00.000-08:00

Lizzy Mercier did a really cute song called "tumor" in 1976, sung to the tune of the classic Peggy Lee song "Fever".

Listen to it HERE, via Hype Machine.

A couple more of photos of Lizzie:

+Patti Smith on the left

2010-03-07T19:11:00.000-08:00

Some bald high fashion for you:

me without hair, I missed those little follicles.

no rest for the wicked

2010-03-03T02:08:00.000-08:00

pain status: gradually increasing aching at tumor site, lower back, and left femur. The pain has been waking me up around 1 or 2am; I can't return to sleep unless I've taken 2 percocet and smoked a bowl. I will henceforth be referring to this blog as "increasingly annoying late-onset scar tissue pain is hilarious." Make note in your bookmarks.

This quote is from one of my favorite books, Letters to a young Poet. I had it on my wall while I was going through chemo. Don't be scared, rather, appreciate the unknown.

“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.” -Rilke

I want to be de-cancered.

2010-02-18T10:11:00.000-08:00

Kairol Rosenthal will be at Modern Times in the Mission next Wednesday to read from her book, Everything Changes. I will be there too, so if you are in the area, let's meet up and exchange horror stories...

My mom gifted me Everything Changes shortly after it came out. I had just finished treatment. I sifted through some of the pages thinking, "This would have been great a year ago". I wanted nothing to do with cancer, I wanted it to be solely in the past. So I put the book down and went on with my self proclaimed un-cancerous life.

But, Kariol's book is a resource for those who've already ridden the cancer roller coaster and lived to tell about it. One thing that is becoming more and more apparent is that I'll never rid myself of that death-defying thrill ride. It wasn't the cancer itself that was traumatic, it was the treatment. And, the treatment rarely cures us. It affords us more time, at the very least, and for that I am grateful.

I have been attempting to manage my chronic pain via Kaiser's services. It's slow going, with the majority of treatment lines requiring you to take weekly classes that have little to do with anything before you start the program. Once I'm past all of the red tape, I hope to learn to manage all of these nasty after-effects, both physical and psychological.

One quote in Everything Changes that perfectly encapsulated my sentiments:

"I felt like I had to fight for my right to be pain free. My Nurses made me feel like a drug addict after my bone marrow biopsy. 'Nobody else needs pain killers,' they said, all condescending. Sorry, but I'm the boss of my own body." -Dana Merk, 24

WORD!

Listen to your body, not your doctor.

2010-01-21T18:36:00.000-08:00

Scan Results: NED. Woo! 8 months cancer free!

This hospital trip was slightly better. I was able to hold it together until the Asian lady at the bakery refused to serve me. Isn't that always the way it goes? You keep a straight face throughout the day, and then the tiniest insignificant obstacle causes a full blown shit-fest.

I gritted my teeth through the port flush. I asked my Onc about disability options and was denied (damn kids trying to abuse the system). I voiced my concern over worsening chronic pain in my hip/back/everywhere and, because my scans are clear, was not-so-subtly accused of opiate dependency (damn kids trying to abuse the system!). Because scans tell ALL, right? If the scan says I'm not in pain, I guess I'm not in pain.

So, feeling defeated despite the joyous news of N.E.D, I sought respite via coffee and pastries at the Kaiser cafe area. I order my shit. I have no cash. I am three dollars away from being able to use my debit card. "No card, under limit!!!" militant Asian lady snaps at me. I am unwilling to buy 4 more muffins just to be able to use my card. Defeated again, I ask, "can I have a cup of water?" She slams a little paper cup on the counter. "Fifty cent!!"

I stare at her. Are. You. Fucking. Kidding me. You will not give a cancer patient a mother fucking dixie cup? And then I lost it. Like, completely lost my shit and sat bawling, hungry, and humiliated in the cafe until I could pick up my prescription.

Moral of the story: If you are poor, always carry cash. If you are a cunt, don't work at a hospital.

So, back to my Onc visit. Now that I have hair and look like a normal twenty-something, I am noticing a massive amount of skepticism and disbelief when it comes to medical issues. There seems to be a general misconception that young people can't be trusted. We just want drugs and attention. People, even medical professionals, fail to realize that Chemo completely rapes and pillages your body, causing long-term issues unrelated to cancer. Chemotherapy annihilates cancer (if you're lucky) just as it annihilates the rest of your healthy cells.

If I were to listen to my Doctor, I would be taking Ibuprofen and hot baths for debilitating pain. I would assume the pain is all in my head. Which was exactly what I was told before my Cancer diagnosis.

I am angry about all of this. Livid. And I'm not quite sure what to do about it, suffice to say: Listen to your body, not your doctor. Do research yourself. Find your own solution. Make your own educated diagnosis. Get second and third opinions until you finally find someone who will listen. Don't sit back and suffer.

oh and p.s.- I'm still working on getting my computer fixed. Despite the rant above, I am so so happy to be in remission. I'll take my pain over cancer any day...

Fraud fun!

2010-01-05T23:46:00.000-08:00

After more viewing I am POSITIVE this girl is a complete nut and hasn't gone through chemo.

I don't know whether to be impressed at such an elaborate prank, or belittled...

It's official.

2010-01-05T22:11:00.000-08:00

My laptop is broken for good this time, so until I can procure some cash money, this blog might be rather sporadic...

I can still post little things using my phone, though. It's not all bad.

Scans tomorrow. How long has it been? Eight months in remission. The second I start to breathe again I am reminded that my luck could change at any moment. I always try to stifle the excitement.

SO.

I was searching the youtubes for "funny cancer" (because I'm that creative) and came across this video. I was intrigued by this girl so I checked out the rest of her posts. Something about them gives me the willies. As in, unauthentic, cold, vague. You can see her hair follicles! I'm really curious to hear everyone else's opinions, because maybe my painkillers are making me hallucinate:

Your take?? It seriously creeps me out.

trannylicious christmas wishes

2009-12-25T09:00:00.000-08:00

Merry Christmas all.
My gift to you is this wonderful wig tutorial courtesy of the fashion group on PC.
I knew my doppelganger was out there somewhere.

t'was the day before Christmas...

2009-12-24T12:23:00.000-08:00

and not a cancer cell stirring (I hope).

Christmas brings mixed feelings. I love being home for the holidays, but I can't help remembering December of last year; it was the lowest, most despondent, most painful month of my life. And hey!! It's all documented here, just a click away.

Here I am, sitting in the exact same spot on the couch, laptop and all, that I sat for all of those miserable months. I see the big tree on the other side of the window, bare spindle arms still exactly the same. I remember watching the leaves fall and imagining each one a cancer cell, withering, dying, disintegrating into non-existence. Hoping the seasonal cycle of death was happening in my body as well.

It was.

I am so thankful I went through veritable hell and made it back for one more year. A few of my friends didn't, and I feel as though it's my duty to relish every sensation that they've been robbed of. Happiness, gratitude, I feel it in my bones.

Hair update: It's growing in kinky and I can totally comb it into a righteous fro. I've always hated the smell of unwashed hair, you know, the combination of oils and skin and such, but I LOVE it now. I run my fingers through my hair and inhale. Mmmmmm, to be human again. And bangs! observe:

This next bit might be TMI, but then, I suppose that's the point- my little ovary buddies are working again, complete with PMS and cramps and the holy parting of the red sea. Apparently my chemo-induced menopause was temporary. Who knew I'd be so happy to be bloated and irritated?

enough about me...

I want to pass this contest along but I'm too lazy to summarize, so here's the deal:

Honor a special oncology nurse for CURE's 2010 Extraordinary Healer Award
for Oncology Nursing

For the fourth year in a row, CURE is giving you a unique opportunity to
honor an oncology nurse through the 2010 Extraordinary Healer Award for
Oncology Nursing! CURE will accept essay nominations from patients,
survivors, caregivers, and peers describing the compassion, expertise, and
helpfulness that a special oncology nurse has exhibited.

Three nurse finalists and the individuals who nominated them by essay, plus
one guest each, will receive round-trip airfare and two-night accommodations
in San Diego, where they will be honored at a reception to be held in
conjunction with the Oncology Nursing Society's 35th Annual Congress, on May
13th, 2010. One nurse will be presented with the 2010 Extraordinary Healer
Award for Oncology Nursing, and will also receive a special gift in
recognition of his or her service to cancer patients and survivors.

The deadline is April 5, 2010.

See http://bit.ly/76xoPg

I love my oncology nurses. I give them a mental hug every time I think of them. Perhaps they deserve more than invisible gestures of gratitude.

computer withdrawls

2009-12-16T12:02:00.000-08:00

I haven't died.

My laptop's got a broken screen and I've no money to repair it, so I'll have to wait until I can borrow a computer for a real, juicy, satisfying update.

In the meantime, I've been reading Mutants by Armand Marie Leroi, which covers the history of medically documented "mutants" and human genetic variety. There is a chapter on osteosarcoma that is particularly fascinating. Apparently there is a correlation with height, growth hormone, and propensity for rampant bone cell growth. More on that later...

I've been having pain in my left leg and pelvis again, and it feels exactly how it felt 2 years ago, before I was diagnosed. It gets worse at night. It gets worse mid-month. I can practically mark my calendar. My onc says not to worry, but that's what they told me pre dx, too. I really, really, really think it has something to do with my hormones. Every doctor I've ever spoken to assumes I'm wrong, and yet no one can give me an explanation.

Maintaining a "normal" "successful" quality of life with disease is effing near impossible. I feel exhausted and broken-down every night, the consequence of trying to make it work. har har.

more later my lovelies.

life is a struggle, right?

2009-11-24T10:22:00.000-08:00

A brief update: I am currently working on my senior thesis collection for fashion design; a culmination of my college work and personal artistry. It is exciting and rewarding and STRESSFUL AS HELL.

Normal stress after cancer is proving to be an uphill battle. In my pre-cancer days, I'd stay up for days and a time, drink gallons of caffeine, and kick out a project that I could be (reasonably) proud of. My body would recoup in a few days and I'd be fine.

Now, things are drastically different. I am managing my time well and have allowed time for rest, but my body is screaming at me. I like working with a deadline, but I worry that my body won't be able to keep up with the demands I'm putting it through. 10 hours a day, every day, I've been draping, pattern drafting, sewing, drawing, crying in the shower with my clothes on, all with wide-eyed anticipation for May.

After a few days at work my muscles are burning. Everything aches, from my back to the tips of my fingers. I've had a cold that's been waxing and waning for 3 months now. My PTSD symptoms are out with full force, presumably due to all of this stress. I am not complaining, I'm merely documenting my experience. I understand that cancer, PTSD, stress, and the general "failing" of my body won't go away, and I'll need to cope and adapt. That said, I am the happiest I've ever been in a long, long time. Or perhaps, just more appreciative of happiness... :)

Here is a really great, accessible essay on PTSD. I relate to just about everything that is written.

Here's a sneak peak at one of the muslins I've been working on:

So basically, in a nutshell, I'm stressed and in pain and it sucks, but I'm trying to work it out. [Not "make it work", I swear, the next person who says that to me gets a pressing block to the head.]

2009-11-06T16:58:00.000-08:00

I'm not going to go all Patch Adams on you, but if I did you'd have permission to kill me, as you have permission to kill Robin Williams now. I will be producing a Cancer Comic that I'd like to mail (for free) to cancer patients and infusion rooms. The comic book will be called "Terminally Illin'", and will follow Cancer Girl through the hilarities of vomit, bald heads, mutant bunny-rabbit-killing machines, et al. I will be emailing some of you soon with details.

Hilarious things that have happened to me:

-I was so drugged up once and vomiting my brains out that I thought the toliet was talking to me, kind of like Peewee's Playhouse.

-All of my nose hair fell out. This seems inconsequential, but I didn't have boogers for like 8 months and kind of missed them.

-I camped out on the couch for weeks because I couldn't walk. My sister's little Yorkie terrier walked up to the end of the couch and peed on my bald head. FML.

-I traveled into my own body with my battlecat via ultra-high radiation beams and sought out to destroy the Tumornator (tm) and his army of cuteness.

One of those things may or may not have happened. So, If you send me your email, I will update you on the progress of the comic, donation incentives, and hopefully a free copy when we're through!

gurgle... I'll be back. (I hope not really)

2009-10-30T10:05:00.000-07:00

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:

http://www.hphdhelp.org/default.htm

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

It's all good.

2009-10-29T16:42:00.000-07:00

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!

Everything will be Alright.

2009-10-12T13:49:00.000-07:00

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.

D-Day or CT-Day?

2009-10-07T10:12:00.000-07:00

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.

FUCK CANCER.

2009-10-03T19:44:00.000-07:00

My heart goes out to Ray tonight. I hate my bones and they hate me.

www.givecancerthebird.org

Almost Forgot.

2009-10-02T16:49:00.001-07:00

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

2009-10-02T05:20:00.000-07:00

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...

QUESTION.

2009-09-18T12:30:00.000-07:00

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!

2009-09-15T18:26:00.000-07:00

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

2009-09-09T12:03:00.000-07:00

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

2009-08-26T15:02:00.000-07:00

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

2009-08-13T18:06:00.000-07:00

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

2009-07-28T14:24:00.000-07:00

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

2009-07-28T13:59:00.000-07:00

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.

2009-06-20T15:44:00.000-07:00

Long time no update!

I have been busy... real busy. Moving back to SF next weekend, still job hunting, fixing up the scooter, purging all of my posessions and old memories. Life after cancer is a wonderful and terrifying thing- my body feels stronger with every passing day, but my psyche is taking quite the beating. I feel hollow and numb. When anxiety builds up and becomes too much to handle, I simply shut down. At times I'm unable to run simple errands, or even update the blogs I'm committed to. Though chemo was the toughest trial of my life, I was able to revert to a safe, catatonic state in which I had no responsibility other than getting well. Now I've got to start living again, hurrah.

I see that this blog has been listed as a Top 50 Cancer Resource on asbestosnews.com. To whoever wrote the article and the touching review, thank you! I recommend checking it out, it's got links to many other fantastic blogs in the young-adult cancer community.

Occasionally I will get emails from others who are just beginning this journey and have somehow stumbled upon my blog and found inspiration in my story. I LOVE receiving these letters. I am humbled and deeply grateful that this blog is doing exactly what it was intended to do. It validates my entire cancer experience.

In other news, my hair is gowing back! IT COMES BACK, trust me. It took about a month, but now I've got eyebrows and armhair and little downy fuzz all over my head. Lately I've been having frightening hair dreams- last night I dreamt I had an afro, while last week my hair came back in a ring around my head. Terrible!

Oh, another thing. I recieved my retroactive disability check yesterday! Holy. Crap. I am so, so thankful that I took the time to fill out all of those forms and pester my oncologist for weeks to get a testimony. I urge any of you who haven't considered SSD to talk to a social worker and see if you're eligible. I hadn't worked "on the books" since 2007 and still qualified. Without it, I couldn't possibly start my life again so soon. More info at www.ssa.gov.

Here are video/pictures from my surprise birthday party last month. It was ridiculous, the amount of love I felt that day...

float on

2009-05-22T15:30:00.000-07:00

some pictures of the celebratory balloon ride:

Now back to real life, back to solid ground.

I've been trying to handle all of my post-cancer emotions like an adult, i.e., not bitch about anything and keep the pain to myself. Like all of that hot air held in the balloon, I'm either going to violently combust or gently float on. We'll see.

Applying for many a job in SF, also looking at an affordable room on 9th and Lawton by the park. I'm pretty terrified that I'll start building my life again and three months from now, when my first scans are taken, it'll all come crumbling down again. Please please please cancer don't come back.

oh, and my birthday is next week, though I don't feel much like celebrating. Can I be 23 again?

I love all of you and hope to see many of you soon.

welp.

2009-05-14T14:36:00.000-07:00

I am officially in remission.

ummm.

so...

yeah...

now what?

.
..
...

shit.

I'm not special anymore, am I? I'm jobless, homeless, broke, bald, and "healthy" on paper. My oncologist seems to think I'll be fit for a 40 hour work week by next month. Thanks cancer, thanks a lot.

Thanks for the "life lesson". It's been fun, really.
IT'S BEEN FUCKING HILARIOUS.

totally OT

2009-05-09T19:09:00.000-07:00

Awkward Family Photos:

one of my new favorite blogs.

www.awkwardfamilyphotos.com

bloggedy blog blog, fashion, whatever.

2009-05-07T09:41:00.000-07:00

I've been lying here sweating out a fever for the last couple of days... fever ALWAYS happens to me in the weeks subsequent to chemo. It would be nice to be able to eat something without chuking. My tummy misses food. My ass does too.

Blogs. Blogs are such an amazing phenomena, aren't they? I love this mass articulation of personal thought. Bloggers stradle both the selfish and selfless all at once. To start a blog and assume someone really wants to read about your banal life is quite selfish, and yet, those banalities might have a little seed of inspiration, entertainment, or perhaps even provoke a thought or two.

I suppose I am officially a BLOGGER, being slightly too self centered to write about other people, ie journalism, and lacking the attention span for essays and the like. I was asked to write a fashion blog for Spanish Moss Vintage, which is an awesome up-and-coming indie retailer, and I enthusiastically accepted.

The notion of starting a fashion blog came to me last year when I was trend researching for Goorin, spending 8 hours on end trolling the internets for fashion inspiration. But, I was busy with my own line. And then I got cancer. Ah, life.

So now, someone has done all the dirty work and designed a blog just for me. It's a great concept and I REALLY want to use it to promote independent talent, because I know how hard it is to market yourself as a designer.

If any fashionists out there have any suggestions on who/what I should cover, let me know. Send me an email, anything.

Check it out!

a disclaimer: I really had no say in the fact that my big huge MUG is splayed across the top of the page, haha.

ugly bones.

2009-05-05T02:31:00.000-07:00

Drove to Oakland today to visit the orthopedic surgeon and discuss my options.

So, so. Here's the deal. My cancer is undetectable at this point. Surgery would give me an even better chance of survival, but I'd be debilitated for the rest of my life. The surgeon would have to take out all of this:

(don't you love how I bust out Illustrator at 2 am?)

I'd be in the hospital for 6 days and have to walk with crutches or a walker for 6 months. I would probably permanently have a limp. Or lean, I guess, if you want to get all gangsta on me. Because I've had radiation and the bone is dead, they wouldn't be able to do reconstructive surgery. I'd be misshapen on one side.

Needless to say, I'm electing not to get surgery. eff that crap.

Whenever people ask how I'm doing the tears automatically start rolling. I don't fully understand it. I won't be thinking a sad thought. I'll be happy, I'll want to say, "I am amazing, I feel alive, I feel purified now." But I'll get a lump in my throat instead. The words stumble around in my mouth, I cry instead of crying out my post-chemo revelations.

I wonder how many years of therapy I'll need for this?

Never mind all of that, take a look at this. This makes me happy. I had it commissioned one dark and rainy night from Epicbones on Etsy. More on that later... I'm going to love this thing forever.

retail therapy

2009-05-03T11:42:00.000-07:00

The lady has had a tough year.

The lady deserves the finer things in life, which is why she is buying herself the following rad ass self-birthday presents. She need not justify things further.

whaaaaaat isn't this amazing?

The lady would post something more meaningful, but she's pretty out of it, much like a car crash victim right after the airbags blow off. I can't feel my legs! seriously.

2009-05-01T17:07:00.000-07:00

last chemo.

One of the nurses brought me a balloon, which was quite touching. I did shed a tear or two.

Now I'm lying on the living room floor intermittently puking and watching Showgirls. And slowly, sllooowwwly waiting for my hair to grow back...

ideas for my chemo cake tomorrow

2009-04-30T06:59:00.000-07:00

because you've all been joking about getting me a cake, right?

"happy chemo... don't ruin it for the rest of us"

"don't puke here pls"

"look it's butter frosting."

And now I've just thought of this random one, if you were getting a cake for a total cunt you could get it in chocolate and write "chocolate kills bitches, sorry."

haha! ok back to mesna and vomiting my brains out.

fundraising 101

2009-04-26T22:26:00.000-07:00

I am trying to raise funds in order to get my arse back to SF by the end of the summer.

For the next few weeks I will be selling TONS of women's vintage and designer clothes on Ebay. Please help me out! Most of the clothing is a size 4/6 and shoes are 8/9/10.

And, of course, my vintage is EFFING AWESOME, because it's from my own closet. Some of the 50's/60's dresses are hand sewn with impeccable details.

Prada, Sigerson Morrison, gladiator sandals, german dirndles, bombshell glamour, mod blazers, ETC ETC ETC.

Also... don't make fun of my pictures, hah. It's embarrassing enough as it is.

SHOP!!!

gimpy wimpy

2009-04-26T02:35:00.000-07:00

I can't sleep and I'm all fuzzy from opiates.

I've been obsessing over the prospect of surgery lately.

I'm not so worried about the gnarly scar... wouldn't that be fun? I could say I got shanked in prison or jumped into the polar bear cage at the zoo. And walking with a cane... I could make that cool. Maybe. I'll have to get one with an animal head for the handle. No, no, it occured to me that I probably wouldn't be able to walk in heels for quite some time. THAT is what bums me out. My fucking shoe collection.

Let me explain before you conclude that I'm the world's pettiest cancer patient. With sexuality comes power, a certain vital sense of control, that is utterly wiped out by cancer treatment. I can't hide behind my femininity like I used to. I can't brush my hair over my eyes. My curves are gone. I can't even fuck right now (chemo apparently restores virginity, fyi, something my doctors failed to tell me about). My only consolation, really, is "faking it" with wigs and dresses and heels, praying it all comes back to me once my body heals. Like riding a bicycle, right?

So don't take away my stilettos, cancer, because I really don't think I can handle the cruel cruel world of comfort footwear.

On a totally unrelated note, Grass Valley is surprisingly beautiful. Places like these make it all worthwhile, don't you think?