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.

Stupid Cancer

I wore this Stupid Cancer wristband during my surgery as a good luck charm. Still in hospital but hope to be freed soon. Flipping the bird at cancer, not you...

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...

Cancertainment

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

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

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

when it rains, it pours.

ugh.

My counts are too low for chemo today, so they're pushing everything back a week.

I have to go to the hospital for a blood transfusion tomorrow, thursday, and friday a bone scan.

My mom's car is in the shop for the next four days, so everyone is trying figure out how to get me to and from the hospital. I still have no ride for friday.

I fucking hate this. I hate being a burden to other people and I hate not being able to do these things myself.

the thermostat is broken.

Fact: when I am all done up in makeup and a wig, the technicians prick me harder while they draw blood, as opposed to when I look like a chemo patient. Note to self: look sick all of the time and reap subsequent sympathy benefits.

I've noticed a pattern with many health care professionals I've dealt with. They view their specialty as their business, instead of people. When I was having a phone consultation with an oncology surgeon, he told me that hip surgery was his business, it was how he made his money, so he wouldn't tell me his assessment as to whether radiation was the best choice. In my opinion, helping people make the right decision is part of this job responsibility. Helping people. not just processing blood or taking temperatures or preforming a routine surgery. Caring for people. There are feelings and nerves and souls underneath all of those bodies. I guarantee I will remember the onc nurses who put care and compassion into their work until the day I die.

Radiation is finally starting to rear its ugly head in the form of a massive purple-and-slightly-itchy bruise on the left side of my hip. This thing BETTER heal. I suppose it's less obtrusive than the scar I'd have if I had opted for surgery.

I have had fevers all week but haven't gone to the ER quite yet. I've decided to wait until my temperature hits 102, as hospital stays are not always conducive to wellness. I love how sensuous a fever can be. Hedonistic, even. Heightened body temperature, drenched in sweat, your heart beating faster. You can almost feel the blood pulsing through your veins. Your body aches all over, but a tolerable ache, so that it's not so much pain as a total awareness of the body. Vision becomes blurry. You melt into yourself. I almost enjoy it.

hello from iceman.