death is not the end of this song

it's been stuck in my head lately.

"How astonishingly (here I must premise that illness, as far as I can judge in so short a time, has relieved my mind of a load of deceptive thoughts and images, and makes me perceive things in a truer light),--how astonishingly does the chance of leaving the world impress a sense of its natural beauties upon us! I think of green fields; I muse with the greatest affection on every flower I have known from my infancy--their shapes and colours are as new to me as if I had just created them with a superhuman fancy. It is because they are connected with the most thoughtless and the happiest moments of our lives. I have seen foreign flowers in hothouses, of the most beautiful nature, but I do not care a straw for them. The simple flowers of our Spring are what I want to see again."

Keats 1821

reflections and predictions

Since I was too busy with work to properly reflect on New Year's resolutions, I'll do so now.

But first, a little catch-up:

Monday was our a/w 2012 fashion show at Betsey Johnson, and sadly, my last day with the company.

backstage

this plaid was my doing (via style.com)

1/2 of the assistant design team

Working at BJ (however brief a stint it was) has proved to be one of the highlights of my life-- purely for the amazing people I've met, and the chance to know Betsey herself,  a personal idol of mine since I first resolved to navigate a sewing machine. How many people can say they've fulfilled a dream job they had at age 13? 

Unfortunately mine was a temp position, and my body ultimately couldn't sustain the 12 hour workdays for more than 5 months. The day after show I flew out to CA for scans to determine the source of my increased pain. I'll see my oncologist one last time this Tuesday for the results.

This break in Work brings up many questions about my future, which is something I am always reluctant to think about since Cancer. How can I find a job with a lower physical impact? How can I find a position that actually offers health coverage ( i.e., how to escape freelancer's purgatory)?  On a broader scale, what do I want to do with my life, now that I know my body can't quite hold up to 7th ave fashion industry? Now that I have crossed a life-goal off the proverbial list?

My thoughts scan back and forth between what has made me most happy in life, and what I could do to make others most happy.

Sometimes I settle on my past, on faults and bad coping mechanisms, or physical pain, but only briefly, as I remember all of the good I am capable of doing if I so choose. Without intending to sound melodramatic-- every single day is a struggle. But the days seem to keep coming.


So, what now?

what happens after cancer?

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've found that most PTSD information available online 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).

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

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

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?

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?}