Friday, 25 December 2009
Thursday, 24 December 2009
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.
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.
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.
Wednesday, 16 December 2009
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.
Tuesday, 24 November 2009
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.]
Friday, 6 November 2009
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)
Friday, 30 October 2009
I've found a great resource for those facing an amputation due to cancer:
They've even got a support group. Check it out!
Thursday, 29 October 2009
CT results are N.E.D. My scan is showing improvement of the inflammation that radiation has caused. All looks good. My oncologist won't let me take my port out until the next scan in January.
All looks good...
The physical seems to be healing faster than the psychological. I'm trying my best. It's hard watching my Ewing's friends fall; I feel guilty for being so lucky. I wish there was more I could do, I wish I could change things for all of us.
I've recently organized all of the self portraits I took during treatment and have posted them to my FLICKR. It's interesting to see my range of emotion... the cute to the terribly ill. You can see a weight in my eyes during the chemo sessions. My eyes look like anvils. Perhaps my documentation will help some of you... look! You're not the only one who has had a disgustingly mangy half-bald head.
My friend and I are working on an art project to raise money and enrich the experience of other cancer patients. Remember Cancer Girl? We want to make her into a full-length comic that will give you something hilarious and uplifting to read while getting poison pumped into you. I remember my attention span being shit when I was getting my chemo... a comic would have been perfect.
Let me know if any of you would like to be involved in any way.
I hope you all are doing well!
Monday, 12 October 2009
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.
Wednesday, 7 October 2009
Saturday, 3 October 2009
Friday, 2 October 2009
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!
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...
Friday, 18 September 2009
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.
Tuesday, 15 September 2009
Wednesday, 9 September 2009
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.
Wednesday, 26 August 2009
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!
Thursday, 13 August 2009
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
Tuesday, 28 July 2009
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?
Oooh no she didn't.
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.
Saturday, 20 June 2009
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...
Friday, 22 May 2009
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.
Thursday, 14 May 2009
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.
Saturday, 9 May 2009
Thursday, 7 May 2009
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.
Tuesday, 5 May 2009
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.
Sunday, 3 May 2009
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.
Friday, 1 May 2009
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...
Thursday, 30 April 2009
"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.
Sunday, 26 April 2009
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.
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?
Thursday, 23 April 2009
It really was fun, I'm not gonna lie. You wouldn't think "sarcoma" and "fun" deserved to be in the same title together, but alas, there it was. We arrived about an hour late and sauntered around Golden Gate Park for the afternoon. The Fun Run didn't cure my cancer, though, and certainly didn't heighten my awareness of sarcoma. I'm already pretty aware. All I got was a pot cookie and a sunburn. it's cool though.
They ran out of free t-shirts by the time we arrived, and there was this wee little man that was furious he wouldn't get his shirt. How else would anybody know he was there? WHY DO IT WITHOUT A FREE T SHIRT?? I know little man, I was thinking the same thing. We ran into him again later and he complained that he'd gotten lost and taken a cab to the finish line. Such a grumpy little thing. I wonder if his nipples were chafing? I bet that's it. I'd be grumpy too.
Thank you Vicki and Rach, you are both amazing.
Monday, 20 April 2009
in all of my life.
as i am at this moment.
i was incredibly foolish to be happy for the end, so stupid stupid stupid for waking up today with a smile on my face.
i broke down and started hysterically sobbing in the waiting room, everyone either staring at me or pretending not to notice, begging the doctor, "please, PLEASE give me chemo this week, it's my last, pleeeaseeee."
no such luck.
Sunday, 19 April 2009
Friday, 17 April 2009
Thrush before the last chemo and a general malaise. Sometimes my mind forgets that I'm sick, seriously so, and calls my body to action, to the normal life, the life of errands and jobs and making other people happy. My body usually concedes until it has reached its limit, raising the white flag of fever, of aching bones. My body, my body. I must learn to listen to my body before all else.
I think of my last chemo and begin to cry, the weight of the experience is overwhelming. On one hand, I understand that millions have gone through treatment before me, I am not special, this is no big deal. This is life.
On the other, I think about the special hell that I have been banished to within my body for the past six months. The feeling of cellular betrayal, your insides crimping and dying and spasming. The daily heaving, blood coming out of every orifice, heart pounding the rest of your body into submission. The sickly smell of mesna, the many, many sleepless nights thinking about death, wondering how it feels, wondering if it will be in a hospital bed just like the hundreds you've laid in before. Wondering if it will be sooner rather than later. The incredible quiet that envelopes everything when you realize you are alone inside your body, fighting with it, dying with it.
I dare not delve any deeper, I'd rather just forget it all.
ortho surgeon consultation on May 4th. We'll decide if I need to lose a hip in addition to all of this other nonsense.
until then, last week of chemo!
Monday, 13 April 2009
How fitting that I receive The Magic Box almost exactly a year later. It's beautiful, just like The Rabbit Box, with colorful, irreverent imagery by Norman Laliberte. The subject matter- death, autumn, reflection- is particularly relevant to my cancer experience. Oh, to someday collect all four.
This little passage in particular spoke to me, probably because of all of those smiles shared with friends on roller coasters. I can't think of any feeling so worthy of remembering. Love and roller coasters, that's all one really needs.
More on my FLICKR.
Wednesday, 8 April 2009
promises, falsetto.This may have only meaning to me, but I think I'm able to spot the weather balloons now. And as tempting as flying saucers are, those beautiful spectacles that make your mind sift and turn, be wary of sticking your head up into the clouds with them. Chances are they're not there for the same reasons as you.
i am tired
of false hope and weather balloons- unmanned vehicles of imagination sent up and mistaken for something more extraordinary, until gravity's hands intervene.
Now that I have sufficiently confused you, what a weekend.
Hiking along the beach, baby seal rescue, hippie hill bongo watch, kurt cobain karaoke, many an emotion, fever of 103 and a glorious trip to the ER to top it all off. I live a fairly interesting life when I'm not deathly ill.
Even with the fever I was having a better time than I am now post-chemo. I'd forgotten just how the Adriamycin felt: the metallic taste in your mouth, the feeling of your sinuses/eyeballs/head on fire, the nausea and best of all, the hiccups. I will be out of commission for the rest of April, essentially. And then gloriously reborn in May just in time for hot air balloon rides, symphonies, and most importantly, my birthday.
I'm going to pretend 23 never existed.
Tuesday, 31 March 2009
None. They're too weak to climb the ladder.
What's the real reason Biggie was bald?
Chemo money mo' problems!
What's the difference between a skinhead and a cancer patient?
The skinhead's not going to die from a horrible, incurable disease.
Monday, 30 March 2009
Thursday, 26 March 2009
artwork Nicoray via fecalface.
I wrote a letter to myself to be mailed five years from now, but it suprised me so much in its sincerity that I thought I'd post it here instead.
Are you alive?
If so, I am happy.
You are now a long-term cancer survivor. Reoccurance is unlikely. YOU DID IT. All of the pain and anguish of chemotherapy has been worth it. Can you still taste your foods? Can you still taste success? I hope you've had a little.
If you've had a reoccurance, stay strong. The good days alone are enough to keep fighting. The blue sky, the fresh air, a shared smile. I hope you have found love. Even if it has come and gone, you've had it in your grasp.
Always remember the hollow, nauseous days of chemo, and all that you've learned from cancer. Remember your humility. Remember to give back. Remember to smile, because people say you are more beautiful that way.
If you are dead, I love you, I'm sorry, and I hope someone else can read this.
Wednesday, 25 March 2009
I like the idea of sending yourself something from the future. I think I'll send all of you my secrets, to be read 5 years from now. I'm not sure if I'll be around 5 years from now. If I am, I will be considered a "longtime survivor".
Monday, 23 March 2009
Sunday, 22 March 2009
I can't sleep tonight. The anxiety involved with this drug is debilitating. Last November really was hell- I couldn't walk, talk, eat, sleep. Every movement involved pain. Of course I dread that happening again.
The history of doxorubicin can be traced back to the 1950s, when an Italian research company, Farmitalia Research Laboratories, began an organized effort to find anticancer compounds from soil-based microbes. A soil sample was isolated from the area surrounding the Castel del Monte, a 13th century castle. A new strain of Streptomyces peucetius which produced a bright red pigment was isolated, and an antibiotic was produced from this bacterium that was found to have good activity against murine tumors. Since a group of French researchers discovered the same compound at about the same time, the two teams named the compound daunorubicin, combining the name Dauni, a pre-Roman tribe that occupied the area of Italy where the compound was isolated, with the French word for ruby, rubis, describing the color.
My ruby tattoo has a whole new meaning. As in, if you're on doxorubicin, you're "on ruby street".
Not after Tuesday!
Wednesday, 18 March 2009
I'm going to submit some of my poetry, just to see what happens.
There was a moment last week. I was lying with my friend in bed, listening to a mix tape, our hands together. That's it. It was the perfect example of why I want to keep living life. Holding hands is underrated.
Tonight I am sick of being sick.
Sunday, 15 March 2009
Tuesday, 10 March 2009
misery, misery, misery.
for some reason the drugs cause spasms in my lungs, making me hicup endlessly.
The mesna pump I've got to have hooked up to my port 24/7 does not help- I can barely sleep with the constant "katchha katchha" by my side, reminding me of my nausea and strange foreign poisions running through my veins.
One more month of hell.
here is my baldy head.