Listen to your body, not your doctor.

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!

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.

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

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...

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

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?

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.]