mtv is using my golden tears to raise cancer awareness, and I'm ok with that.

After the surgery last month I had to learn to walk again without part of my lung & diaphragm. The very first day they had me sitting up. The second day I took my IV pole, two vacuum-suctioned chest tubes, a portable motor that sounded like a shop vac and 3 nurses in tow for a walk (if you could call it that) down the ICU hallway. We even tried climbing stairs, but the tubes from my IV only allowed me to take 3 steps up, which I think would be manageable for even the most feeble degenerates among us. I stopped practicing the stairs after that. But I kept walking, and 3 or 4 days later I was doin' laps like lance armst--- I mean, like a pro. It's amazing how fast the body can recover.

After I was discharged from the hospital I went right into chemo cycle #5. I think the extra pain meds have made me extra nauseous this time. There are lots of other "extras" that pain meds give you, like extra hard poop. extra heavy eyelids. extra street cred. extra helpful friends.

For the last few days, Jon & I have been editing the final version of the comic. It's come so very far from the hair-brained scheme we hatched years ago. I had time to kill in the waiting room before one of my (many) doctor appointments, so I pulled out a test-print and started to read. In no time I was sucked into a colorful world that echoed, in a surreal way, the hospital around me and issues I was immediately facing. Jon's drawings are delightfully intricate; you can take your time on each page and notice new details with every read. I was disappointed when  my name was finally called, because it meant a transition from this magical cancer-comic world to real world-- and real cancer. Bottom line: great for making hospitals more bearable. I can't wait until issue #1 is finished.

I suppose I should mention: I will be featured on Season 2 World of Jenks on MTV, which premiers this Monday. The crew followed me for a year as I moved from San Francisco to NYC to pursue my career and a cancer-free fresh start. I'm horribly embarrassed about the whole thing, but I remind myself that I participated in this project to promote young adult cancer awareness and issues of survivorship. When I was first diagnosed I felt so shamefully alone-- my cancer happens to one in a million, and it's even rarer in young adults. The prognosis is grim, but there are a few survival success stories out there if you look hard enough. I wanted so badly to find someone I could relate to, someone to learn from, some lucky soul who had found the light at the end of the IV drip and was ok now. I wanted to be ok too, someday. What I needed was empirical hope. I needed proof through personal experience that my cancer was survivable, that pain is surmountable, that the future is inevitable. I needed accounts of young adults overcoming the physical & emotional upheaval of cancer so that I could be better equipped to navigate my own tumultuous journey. Trouble is, until very recently, people have rarely been encouraged to open up (I mean really open up) about Cancer due to negative social stigma, fear of vulnerability or judgment, or outmoded cultural mythologies of illness. Eff that, let's talk about it! Let's set the record straight and help the newly diagnosed. Empirical hope, knowledge, camaraderie-- this is what I wish to give others by sharing my story with MTV.

Hope creates strength, and with strength we can survive. to ride ziplines.

chronically chillin'

It's so exciting to see the amount of support that our comic project is getting! A BIG THANKS to everyone that has become a backer so far. Every time I see a new donation in my inbox I jump for joy. Someone even donated in palindrome! mmm symmetry. 

Today I want to talk about chronic pain (again, forever, we are always together).  I don't think people talk about it enough, considering how drastically pain can effect daily life. Are young adults too embarrassed? I am. I've always been the independent perfectionist personality type, so admitting to people that I can't handle the physicality needed to do something is always heartbreaking. Often I don't admit my pain and trudge on-- a decision I sorely regret the next day.

Currently I have a friend staying with me that wants to go on all of the amazing tourist excursions one takes while visiting NY-- and I fear I just don't have the energy.

Chronic pain steals your energy and holds it hostage. You've got to ration. If my friend wants to go to the MET & Natural History Museum, (which I'd love to see, btw) I have to plan my energy/pain needs for the day. I have to rest the whole day before, and whole day after.  I can't just decide that morning that I'm going to go. It's hard to explain to "normal" people, because I used to be "normal" and I miss the freedom it implies, even though most people take it for granted.

Imagine feeling exhausted 24/7 from the drugs you take to manage your pain, which is also present 24/7. Now imagine doing everything you do in normal life-- walking to get groceries, working overtime, entertaining friends, cleaning the bathroom, cleaning yourself. Chronic pain turns all of these menial tasks into colossal events that must be planned for. And I really, really dislike planning!

Awhile back I found a superb explanation of this dilemma from a woman living with lupus. You can easily substitute lupus for cancer or chronic pain in her example. If you are struggling to understand the needs of anyone living with chronic illness, especially young adults, I highly recommend reading this "spoon" analogy, cheesy as it might be. Here is an excerpt:

"It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing [sic] a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”."

My point is that I don't have enough spoons to go to the MET today, even though I would like to. It's impossible to understand living with chronic pain if you haven't before-- but it's important to try to understand those who do, and take it into consideration when you're with them. Not in a verbose sickly-sympathetic way, but just... keep them in mind. Us chronic pain sufferers are REALLY good at hiding it.

For that Badass, Becca Babcock.

Last month I was perusing the blogs that I follow, and I was sad to realize that our Becca is gone. I say "our Becca" because she was a vocal (and super-awesome) young adult cancer blogger, who shared her journey and followed along as we shared ours. She was part of our collective voice, and she will always be, thanks to her writing.  I am extremely touched that her mother continues to post her journal entries, so that we may benefit from Becca's private insight. I have years and years of journal entries just like Becca's, and I would hope that my mom would do the same. I think our shared goal is always: I want to be of benefit. I want my life to mean something to someone.  I think that by sharing our deepest fears and pains, we can accomplish this in an especially intimate way.

I met the fiercely intelligent Becca in 2008 through Planet Cancer. She commented occasionally on this blog and she always had good advice. I guess it was as if she'd done 5 successive tours of duty-- she'd been at war for awhile, and she knew the ropes. We all exchange battle stories, but in the end it seems we still feel hopelessly alone. We fight alone. Nevertheless, there are things that Becca wrote, privately, that make me feel not-so-alone:

"You know what one of the most awful parts of cancer is? Knowledge.Of course, that is an odd statement, because at first I would be inclined to say that is one of the gifts of cancer. When trying to appease myself somehow with the thought of cancer and all that it entails, I would find a very small amount of comfort in certain knowledge that comes with diagnosis.That knowledge includes things such as: I KNOW the true meaning of the phrase 'Life is Short'."

[I often feel that I "know too much" for my own mental health, due to what cancer has taught me.]

"I think often how I don't think I'll be alive very long. not like I think I may keel over, say, tomorrow. but unless a miracle happens very very soon, I feel inevitably, I'll be defeated :(  (incidentally, it's now tomorrow & I didn't keel over...). I sometimes wonder why i can't just get it easy & fall asleep one night & just not wake up? I wonder if people that has happened to, if they could ever appreciate how lucky they are to have that happen. they not only have no idea that's coming, they don't have to spend time agonizing over unfinished business... they don't have to worry about the pain and suffering associated with a sudden violent death. I really envy those people. Anywho, I'm kinda just weary on life today. I can't wrap my mind around my life at this time. I don't seem able to find motivation in order to "care" about things. & in general...I'm just tired of people. normal people. they bother me without even trying or attempting to. oh, that, and it's back to cold.  BAH."

[link to Becca's amazingly articulate, literally bad-ass blog here]


I want to dedicate my life, somehow, to young adults with cancer-- there is nothing else I feel passionate about anymore. I've spent the last few months in an incredibly deep depression. It has been difficult coming to terms with life in the afterglow of cancer. It has left an indelible mark of uncertainty and finality upon my life. It has left physical and mental pain that has yet to resolve, and at times is overwhelming. I am still searching for a life after cancer. Turns out it doesn't just come to you naturally, like breathing, as one would expect. You really have to fight for stability and your own ideal future. You have to come to terms with the knowledge you've been given-- that pain endures, and death is imminently unknown, and therefore life is precious and bullshit is insufferable. Right now, that's what I'm working on. If I can get past those things, and stay healthy, I'll be golden.

I am unsure what role I will play in cancer advocacy, but I'd like it to be an ongoing goal. For now, Jon and I are continuing with our Cancer Comic. If things go as planned, we should have the entire graphic novel finished by September, just in time for the MTV documentary to air. We are adding some of my personal writing to the final publication, and I've been thinking about opening up a submissions process to allow fellow cancer writers and artists to be published. Thoughts? Anyone interested in submitting an essay or illustration to Terminally Illin? I feel that it could have a monumental effect on the future cancer community if it became a communal, collective effort... but I'm unsure of how to facilitate this.

I am also planning on being much more active here on CIH, because I've realized that my writing continues to positively effect people's lives. I want to say that I appreciate immensely the feedback that my readers give-- there are many visitors largely unknown to me that have been following my story for years, probably out of morbid curiosity, but also out of compassion and a genuine appreciation for human expression. People like me, people like Becca. People like you. Let's keep sharing, no matter what.

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?