White House or Bust

Last week, we got a call at Planet Cancer HQ from producers at ABC News, asking us to submit a question and names of potential attendees for the Prescription for America, a nationally-televised town hall on healthcare reform with President Obama.

End result: our question wasn’t picked for the guaranteed Q&A, but we scored four audience slots and the tantalizing possibility that one of us would still be (sort of) randomly picked to ask the President a question.

Which took me to a scene straight out of “Planes, Trains and Automobiles.” At 3 a.m. on Wednesday, I left my sleeping family in south Texas on vacation at the beach, and I headed into Corpus Christi to catch a 6 a.m. flight to Washington D.C. Over the course of the day, I had flights cancelled and rescheduled, attempted to rent a car to drive to San Antonio, failed, slipped onto a Dallas flight, was rescheduled again to Dallas, passed over on another standby leg and, finally, got on a flight to D.C. that landed 45 minutes before we were supposed to be at the White House. With guidance from Twitter friends (thanks, @livestrongnj and @jamielindsay!) and local PC member Carrie Morse, I hauled ass to the Metro, rode into DC and ran to the southeast gate of the White House to meet the rest of the crew exactly at 6 p.m.

I met my PC colleague Courtney there, along with board member Fayruz Benyousef and another PC member, Ruben Garza, all of whom are also young adult cancer survivors.

Ruben, Fayruz, Courtney and me in the East Room of the White House.

They had brought me appropriate clothing from Austin (beachwear is apparently NOT appropriate for an audience with the Prez) and were holding my place in line. Once past Secret Service screening, I found my way to a bathroom and changed, taking the moment to catch my breath and let the circumstances sink in. (Oh, and to realize that the voice in the next stall was just DIANE SAWYER, THAT’S ALL.)

La Diane

The four of us, along with the other 150 invited attendees, were escorted into the East Room for the taping. We took our assigned seats and settled in for two hours of conversation with Charlie Gibson, Diane Sawyer and President Obama about reforming healthcare in America.

My question was, in case you’re curious:
“Mr. President, I was cured of cancer when I was 26, but that diagnosis has plagued every major life decision I have made for 15 years. How will your plan help the millions of young Americans--either in a health crisis or trying to move beyond it--live their lives according to their talents and aspirations, NOT according to where, how or even if they can get health insurance?”

Disappointingly, we did not get called on. The format was much more pre-scripted and less spontaneous that we had hoped. But perhaps even more important, we DID meet several producers from ABC and Courtney is now BFF with Dr. Tim Johnson, their chief medical correspondent. As always, we want to get a foot in the door and then work the angles patiently and relentlessly to make it pay off.

But if we didn't get to ask a question, why was it so important that we all get to D.C.?

Because NOW is a moment that may not come again for a long, long time, and we’ll take any chance we can get to make a difference.

There is widespread acknowledgement that our healthcare system is broken, and the solution is still a work in progress. President Obama has declared healthcare reform a top priority this year, and whatever comes out of the sausage-grinder of legislative process could affect us as young adults more than any other group.

Although I didn't get to ask my question, there were several points made in the evening that, in effect, addressed it and covered the biggest issues for young adults, primarily around portability (your insurance goes with you whether you move or change jobs) and dropping the curse of the pre-existing condition.

As young adult cancer survivors, we are the collateral damage of our current system. We are the most likely to be under- or uninsured to begin with, and once you have that scarlet letter “C” on your medical history, you can kiss easy access to insurance goodbye until you're Medicare-eligible, unless you are fortunate enough to be covered through your job.

But even that—employer-based insurance—is a double-edged sword. Young adults may stay trapped in less than desirable jobs or situations in order to keep health insurance, which, given where this occurs on the span of our careers, can have a huge impact on the rest of our lives. Want to dedicate yourself to that exciting software startup? Good luck. Better to go on to grad school or keep your barista job on the side, because you’ll be out of luck if your cancer comes back while you have a lapse in coverage.

I’ve never considered myself a political advocate, but now is the time for us to share our stories of how the current system has failed us, and offer suggestions AS EXPERTS on how it could change for the better. We are the ones who stand to gain the most—freedom of choice, portability, a safety net—or we can continue to be royally screwed in this no-man’s-land between CHIP and Medicare.

I, for one, am sick and tired of having to consider my health insurance coverage first and foremost when contemplating any major life decision, from having kids to changing jobs to moving cross-country. I am sick of coaching people on how to get discount chemo through compassionate use programs, sick of cobbling together financial assistance programs that can’t possibly help everyone who needs it, and overwhelmed with invitations to benefit concerts raising money for medical bills.

Most of all, I can’t stop my heart from breaking each time I get another of the hesitant, slightly desperate emails saying, “I was just diagnosed with cancer and I don’t have insurance. What should I do?”

Enough. Is. Enough.

I’m not telling you which way to act—whether to support the President’s initiative or any other option that is presented. But ACT. Seek information, get informed and give feedback to your Congressional representatives. We’ve been invisible for a very, very long time, but over the past few years, young adults with cancer have finally started to mobilize as a group, and now is the time to make sure our voices are heard.

Courtney and I positioned ourselves by the door so that we were the last people President Obama passed on his way out. I said to him, "Mr. President, we have to fix this."

And he responded firmly, "We will."

Let's do our part.

-----------------------------------------------------

Links for information and ways to act, no matter which side of the debate you are on:
(Please send us other links that you find useful or informative!)

American Cancer Society – Cancer Action Network

Families USA

White House Issues Center – Health Care

American Medical Association

Candy stripers or strippers named Candy? What do YOU think an AYA cancer program has to have?

I need your help, guys!

Yesterday I attended an all-day meeting sponsored by the LIVESTRONG Young Adult Alliance, whose purpose was to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. It was a great group that included patient advocates, nurses, social workers, oncologists from community and academic centers, as well as LAF and NCI staff.

The question posed at the beginning of the meeting was this: "What components does your institution's program need in order to truly meet the needs of young adult cancer patients?"

We tried to stay focused on the places young adults' needs differ from older or younger patients. Areas like: fertility preservation, no medical "home," lack of clinical trial access, lack of insurance, need for childcare, no peer support mechanisms, need to stay in school or at work, nomadic tendencies, unfamiliarity with medical and insurance systems, need to maintain independence, shock of facing mortality for the first time...the list goes on and on.

So, for example, an AYA Center would have a dedicated space for young adult patients and internet access. It would have staff trained in the unique psychosocial needs and clinical care of young adult patients. Access to fertility preservation, genetic testing and counseling, financial and legal resources. Childcare assistance. Referrals to appropriate clinical trials. And so on...

Now I want to ask YOU: WHAT DO YOU THINK AN AYA PROGRAM ABSOLUTELY HAS TO HAVE TO REALLY MEET THE NEEDS OF YOUNG ADULT PATIENTS? Bring it on--from the smallest detail to the biggest concept, give me your wish list for an AYA program so we can make it happen!

Just to get the creative juices flowing, I will remind you here that Michael Diaz has already--quite selflessly--taken on this huge task himself, in developing the Michael Diaz Cancer Center for Young Adults. Here are his initial recommendations:

Top Ten Attractions at the Michael Diaz Cancer Center for Young Adults

Loosely based on Michael’s “Cancerland” blog, with contributions from JT, Kristin, Steve51 and Andriu

10. No candy stripers -- just strippers named Candy.
9. Radiation laser tag.
8. You can try your luck at a basketball shooting game, only the rim would be about a foot away, because let's face it, none of us have the strength to shoot a basketball a normal distance.
7. And we'd win cool prizes, like, like... insurance coverage for another year. Keep the fucking stuffed animal -- give me something I could REALLY use.
6. One of those mist things that would spray the med of your choice. (Imagine that. Now imagine that spraying Dilaudid. HELLZ yeah.)
5. All nurses’ stations will double as full-service bars. Push your nurse call button and order whatever the hell you want.
4. Vincristine [or INSERT CHEMO NAME HERE] would be called "motherfucker" ... "Hey, I don't want any more of that motherfucker."
3. When you're prepping for surgery, you don't need to use any anesthesia. You just have sex until you pass out.
2. Everything will be a game. You know, if you need to vomit, we'll bring in people you hate so you can vomit ON them. Or we can line up the vomiters and see whose vomit is more toxic.
1. And how about a section where they give out nice, sensual massages to anyone who wants one. AND YOU GET A HAPPY ENDING! (wink wink)

Because don't we all want happy endings? Isn't that what we're striving for?

It's nice to dream.

Planet Cancer Roundup (Or "Why I Suck at Blogging")

Hi, guys--
So I am well aware that blogs should be focused on one topic and that they should be updated regularly--weekly or even several times a week. I have EVERY INTENTION of making that happen. But here's the problem: I can't just cram in "write a blog" in the middle of all my shit. I need TIME and SPACE for the creative juices to flow. (Or I need a ghostwriter, right @winediva?)

See? Even just now I am distracted by a Reply on my Twitter feed to my post of "Working on a blog that will essentially summarize why I am a terrible blogger." And I have five replies and am now torn as to whether to reply back or not. DAMMIT. Tweetdeck--OFF.

Reminds me of that joke: "How many people with ADD does it take to change a light bulb?

Answer: "Wanna go ride bikes?"

SORRY! Sorrysorrysorry. Okay, let's try that again.

So instead of being super-creative and thoughtful, I am going to take the lazy way out and offer a roundup to skim the events of the past few weeks at Planet Cancer so you'll know why my blogging sucks, starting in mid-April. A travelogue, if you will....

But if you make it through the whole thing, hopefully you'll have a little better idea of the things we do to keep the Planet spinning and get the word out to the people who can help us grow this awesome community of ours. So.

TOUR DE LIS: April 17-19
Courtney and I headed down to New Orleans to meet friends and family for this fundraising bike ride, started by the family of Josh and Abby Lipschutz, survivors of PC's first couples retreat. It benefits the Cancer Assn of Greater New Orleans, Planet Cancer, and the Lance Armstrong Fdtn. Omigosh, y'all: it was AWESOME. I think all of you should join us in NOLA next year! Here's a little video action so you can see what it's like:

Not just ANY beer. A HUGE-ASS beer!
Which leads me to...

ONS CONGRESS: April 29-May 2
The Oncology Nursing Congress is the national conference for our beloved oncology nurses. This year, their conference was held in San Antonio--conveniently close to Austin--so we headed down there to hand out Planet Cancer information and hang with fellow advocates, including Lindsay and Joyce from Fertile Hope, the gals from Cancer and Careers and the ubiquitous Jonny Imerman from Imerman Angels. It was also a reunion of sorts with Jon and Johnna, the uber-volunteers, and with Kaye Weinrich, another PC couples retreat alumna, who held down the booth since Courtney and I could only stay for a day, because that Saturday night was...

FLAMINGO-A-GOGO: May 2
Planet Cancer's annual fundraiser in Austin. Even swine flu couldn't stop us. (Don't. Even. Get. Me. Started.) I think I shall make this a photo entry. For more photos of the shenanigans, go to www.annieray.net or check out the Flamingo videos on the Planet Cancer YouTube channel.

Olympic swimmer and testicular cancer survivor Eric Shanteau, pinked out!

Look! It's Lindsay and Joyce from Fertile Hope! And Sasha from the Kristen Ann Carr Fund! We danced and danced. And then danced some more!

Everyone giving cancer the bird! This was awesome. Especially the children in the front row. Oops. :-)

That next Thursday I was back on a plane heading to...

AOSW, Savannah, GA
The annual conference for the national Association of Oncology Social Work (AOSW). Here's what I do at these things:

"Please, take my pens. They're funny! They say 'We've done drugs Keith Richards never heard of!' And then send all your young adult patients to Planet Cancer and My Planet. Kthxbai."

And then...I was off to Atlanta to receive an award from the American Cancer Society. But I'm going to stop this interminable blog post right here and now and I'll make that a separate entry. Because it was actually pretty cool and slightly surreal. And I don't have photos yet.

So...I'll be back soon. No, seriously.

The End. :-)

My Cancer Superheroes

Last night we held an Austin event in partnership with the Lance Armstrong Foundation to kick off National Young Adult Cancer Awareness Week. We were hosted by Mellow Johnny's, Lance's bike shop, which is a very cool and hip downtown venue. We had good food, drinks and music, and an awesome local artist named Ian Cion staged a photo shoot for some collaborative community art madness. Let me explain...

So, people put together costumes from assorted wigs, clothing and craft materials, including my daughter's four superhero capes and an astronaut helmet (don't ask me why she has four superhero capes and an astronaut helmet. She just DOES, okay?). Then they bounced on one of two mini-trampolines so Ian could take a photo in mid-air. He's going to cut out the images and superimpose them on a large sky background to create a giant young adult mural of flying people, which we'll continue to add to over the course of the year.

There is a certain method to the madness of this crazy idea. To me, every single one of you is a superhero. You are young adults, facing the indignity of a cancer diagnosis at the time of your life when you are SUPPOSED to be invincible and unstoppable as you charge full force down your life's path.

It's paradoxical, I guess. Cancer shatters the illusion of invincibility but, in that same moment, your real strength and power is revealed. Your "inner superhero," so to speak.

At a certain point in the evening, I was on the phone, calling in to the Stupid Cancer radio show to chat with fellow advocates Matt Zachary of i2y and Kairol Rosenthal, author of the new book Everything Changes. I was listening to Selma Schimmel, founder of Vital Options and a pioneer in the field of young adult cancer support, while I was half-watching Olympic swimmer and TC survivor Eric Shanteau wreak havoc in the SCS chat room with another YA survivor, Jordan Deathe, as they tested the limits of the obscenity auto-filter.

(Seriously, y'all, they were CRYING, they were laughing so hard.)

(Oh, and that cussing idea was not-so-innocently instigated by our very own JT, just so you know.)

And it hit me like a ton of bricks that I was surrounded by friends, both present and remote. That even though we may not all know a lot about each other, we *get* each other. We don't have to fill in the backstory, with all its gory and sometimes painful details, because we already know it. We IM, text, email, call, tweet and hold hands to offer each other support--we've got each other's backs, near and far.

Those of us who advocate professionally--my PC colleagues Tom and Courtney, LAF president and YA survivor Doug Ulman, Matt, Kairol, Selma, and so many others--we support and reinforce each other because we're out there working for a cause that we believe in with all our hearts and souls. We're working for dear life, really. For our own lives, and for friends who lost theirs too soon.

A lot has changed in the world of young adult cancer in the 15 years since I was diagnosed. We still have a long way to go, for sure, but I am overwhelmed by how far we've come.

I am overwhelmed with gratitude for the superheroes, now revealed, who surround me.

So...who's ready to FLY?!

Send Your Stories to Capitol Hill with Kairol! PLEASE RESPOND!

Below is a request from the amazing Kairol Rosenthal--young adult cancer advocate extraordinaire and author of the fantastic new book, "Everything Changes." She is taking our cause to Capital Hill and we need to--virtually--go with her.

If you do NOTHING ELSE for National Young Adult Cancer Awareness Week, write your story NOW and send it to Kairol!

As Margaret Mead said, ""Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." Let's do this. ----Heidi


Hey Planeteers,

Maybe you've seen the logo plastered on Facebook, or read Heidi's gazillion tweets, but in case you haven't, hear this now: Next week is Young Adult Cancer Awareness Week - April 5-11.

This is the perfect chance to tell lawmakers that our health care needs matter big time. Yep, Ms. Rosenthal is going to Capitol Hill. Next week in D.C., I'm meeting with the big wigs: aides to the major committees that oversee health insurance, as well as some White House and Senate advisors.

I want to take with me the power of you! I NEED YOUR STORIES. Tell me where the health system has failed you. What went wrong? Did you get a late diagnosis because you didn't have insurnace? Have you not had insurance because you got kicked off Mom and Dad's coverage? Were working part-time jobs? Couldn't afford it? Or, any other stories about your lives with the government and the big "C" that you think need a little correcting: Medicaid, cost of drugs, lack of access to clinical trials. You name it, I want it!

Let the bitching begin. Shoot me your stories, either comment here on Heidi's blog, or send them to my email address: kairol at mac dot com. Be descriptive and passionate, and limit it to a few paragraphs. Include your name, your age, and your city and state (so they know I'm not making this crap up!)

If we are going to make a change we cannot just raise money - we've gotta raise hell!

Over and out,

Kairol Rosenthal
http://everythingchangesbook.com/

I had to post this, because we've all been there. In fact, my ass was having hemorrhoidal flashbacks while I was reading this. (Makes you want to keep reading, doesn't it?!) Seriously, this is sheer genius. We heart JT on Planet Cancer! --- Heidi

Today we're going to talk about (say it with me) CONSTIPATION.

Yeah, that's right. You heard me. I'm going to be uncharacteristically blunt and go all out. If you'd like to continue thinking of me as sweet JT who sparkles in the sunlight like Edward Cullen, or the JT who gets a gazillion gold stars for cleanliness, adorableness, and appropriateness, then you might want to just skip over this entry. Seriously.

Non-cancer people know that cancer is a tough thing to deal with. They know or have heard about people going through very harsh treatments. They know what chemotherapy is just as they know a bit about radiation. They understand some medical jargon and can even sometimes identify various medications used to treat cancers. It's one thing to piece all of these little things together and have this perception of what cancer must be like and it's quite another to actually LIVE it and deal with it on a day-to-day basis.

We deal with a ton of things, people. Like, I bet you didn't know that brushing my teeth can be such a fucking chore. I have to use this extra soft toothbrush and be extremely careful because any wrong movement can make my gums bleed. And if they bleed and my platelets are low, then I can't clot and it'll be hard to stop the bleeding. Or I bet you haven't thought about how annoying it is to have to take a shower while making sure your central line doesn't get wet.

And when you're taking about a thousand medications and 90% of them list "constipation" as one of the side effects, guess what? You're *gonna* get constipated. And it's *gonna* be a NIGHTMARE.

So as you guys know, I was in the hospital for all of last week. I didn't really have any food. I would try to have something and I would just throw it up. They had me on stuff to make sure I got my nutrients, right? But I wasn't really keeping anything in my stomach. So anyway, I got home and ate a tiny bit of jello and eventually I graduated to a few spoonfuls of soup because anything more and I'd start to feel sick.

My family was laughing at me the other day and calling me Mr. Oprah because I have a problem with my weight. :-( Haha you know how Oprah can gain or lose a significant amount of weight in a short period of time? Well, that's how I am. Only it's not fat/skinny. For me it's built/toned to skinny/frail. In just a few weeks, I can go from looking like a normal athletic dude who is a regular at the gym to looking like a skinny, pale dork. And vice versa. This happened even when I wasn't dealing with cancer, but it happens especially fast when I'm going through treatment. I've decided that I won't succumb to a super skinny/pale exterior without putting up a fight.

SO, in an attempt to keep my six pack, I began to do crunches on the floor. This annoyed my mom because, HELLO, what the fuck am I doing on the floor? She's concerned about germs and infection and all of that. But whatever. I'm 24 years old and I DO WHAT I WANT. ;-) So I do maybe 5 and I'm exhausted. Not only that, but somehow the crunches have made my stomach hurt and I begin to think, "When was the last time I went to the restroom?"

Uh oh.

Pretty much all of the meds I'm on cause constipation. And sure enough it had been days since my last bowel movement. "Shitfuckmerde!" I said to myself. I tried not to panic.

I made my way to the bathroom, locked it, pulled my pants down and sat. *looks around* Yeah, nothing's happening. *checks watch* Hrmmm. This isn't going to work.

So, a normal person would speak to their doctor about this, right? But of course, not me. No, I'm gonna do this.

I was determined, folks. I really was. And eventually, I really felt like I had to go. Just one problem.

OH MY GODDDDDDDDDD. There was NO freakin' way I was going to pass that thing, man! I pushed, but it was like trying to fit a coke can through an opening the size of a straw! Oh hell to the no. Breathe, JT. Breathe.

I decided to get up and regroup and give myself a little pep talk. You can do this, JT. C'mon. You can do this. You've done it before. Remember that time you got a tonsillectomy 10 months ago and you went without taking a crap for 8 whole days post-surgery because of the pain meds? You didn't think it was possible then, but you did it. And you can do this again, man! Just focus!

I turned the faucet and the shower on because I wanted there to be noise just in case I accidentally let out a grunt. I sat down and tried again. And PUSH. GODDDDDDDD! What did I EAT?! Why can't I take a shit?! How did this even HAPPEN?! I haven't eaten anything! How could this possibly be?!?!

I almost started to cry. Okay, I did cry a little bit. First out of frustration, then out of pain, then out of frustration again. Ugh. Stop judging me, assholes. (har har)

I tried for a few more minutes but I just couldn't. Every time it started to hurt, I'd quit. I got up again. Another pep talk. "DUDE, you're GAY. This isn't the first time your ass has hurt." I laughed at this. I remembered seeing some guy on a comedy special say that constipation was like anal sex from the inside out. Not true, but funny anyway.

This time I remembered I had my iPhone w/ headphones in my jacket pocket (my jacket was hanging on the towel rack). I reached in and pulled it out. I scanned through my songs because I figured that in order for me to get this done, I was going to have to get pumped. Found the perfect song:

The song started. And at the first "DUN" I looked in the mirror and gave it this crazy look. I was determined. My butt was like, "as if!" but my conjunctivitis-y eyes were like "let's rock this bitch." As the song continued to play, I jumped up and down a little, shaking down my limbs, stretching them out a little. I rolled my head back from shoulder blade to shoulder blade. I did a couple of toe touches and did several other stretching exercises for my arms and legs. I was ready.

I sat back down, vowing that I wouldn't get up until I had seen results. So there I went, pushing, squirming, crying, gasping for air and pushing some more. At one point I thought, "I'm going to die." Seriously, I really felt like either I was going to pop something in my head or I was going to pop something in my ass and either way, I was going to die. SWEAR TO GOD there were a few times when I was blacking out. My counts are low so oxygen doesn't travel around as well as it should. At one point it got so bad that I pretty much fell over on my knees. I thought, "Oh here we go. How fucking embarrassing is this? People are going to find me dead after taking a shit. Cancer didn't kill me, a ginormous crap did?" Messed up! My life flashed before my eyes. Okay, not really, I was trying to not lose consciousness so I was focusing on my little brother's shampoo bottle that reminded me of bottles of bubble bath I used to like getting when I was a kid. But yeah, anyway, my head was about to explode.

I was convinced it was all over, that I was a goner, until I took a small break and told myself, "Get it togethah, baby!" like Wanda Sykes does in those Applebees commercials. I waited until my vision came back and I grabbed the side of the sink and just tried my very hardest. I pushed and I wriggled and clenched and gave it my very all. I had broken a sweat and went through some pretty bad pain and I'm pretty sure that two more seconds would have killed me, but I came out victorious.

JT: 1

Crazy-Turd-From-Hell: 0.

FUCK yeah. Wiped. No blood. FUUUUUUUUUUCK YEAH!

I flushed (a few times), washed my hands (a few times), and stood there listening to music on my iphone and just basking in the awesome feeling you get after a job well done. I was smiling from ear to ear. I could feel the "MISSION ACCOMPLISHED" sign drop behind me. It was glorious.

I had literally gone through all of the emotions on Plutchik's wheel:

All that's important is that I ended on "Joy." w00t! I seriously wanted to do the dance that Hugh Grant does in Love Actually. Do you know what I'm talking about? Think this, only instead of starting off at the window sill, think about me doing that by the sink:

So anyway, I caught my breath, smiled a bit, and considered dancing out the door, but instead, I quietly opened the door and just stood there and did this:

Victory is mine, bitches.

I hope there is no next time, but with cancer, c'mon, there's ALWAYS a next time. But yeah, should I find myself in another situation like this, I'm going to swallow some of these pills of silver and make sparkly shit.

Being a constant patient of constipation is already hard to deal with. You might as well glam up your shit and not let a crap situation like this keep you from having some fun and making your world sparkle.

Update #1: lol. A friend of mine e-mailed me after reading this and decided to warn me about pushing that hard and what it might do to my hickman. Don't worry, I think I've got it under control.

Update #2: Yes, I know about Senna and will be going that route next time. Believe you me!

Update #3: OMG, someone just told me that I should've used a spoon! *gags* That's so disgusting!

Update #4: People are telling me that the silver pills should be used on diarrhea days at the hospital. You know, if you're gonna Code BROWN it, you might as well make your ass sparkle for whoever is going to have to clean you.

Update #5: The next day, I got a really high fever, I'm talking in the 103 area (which is high for anybody, but especially high for a cancer patient), and when I went to the hospital, they asked me if I was exposed to anything that could have given me an infection. I hesitated a bit, because I was so embarrassed, but I finally told them this story and had to have a special exam done on me! It was like a body cavity search! *DIES* And the worst part of it all was that in the end, there was absolutely no infection. CRAP.

Elvis on my Pelvis [Guest blog by Kaylin]

I found my fellow Ewing's sarcoma peep Kaylin's My Planet page, and was drawn irresistibly over to her blogspot site, after which I took the red pill and kept going farther and farther.....and then I found THIS. Enjoy! ----Heidi

Elvis on my Pelvis
Thursday, January 29, 2009

Last day of radiation is tomorrow, thankfully. I am tired of my outside blistering and my inside turning to mush. Five more chemos left. To say I've been depressed lately would be a gross understatement- bursts of tears will be triggered by something as trivial as guilt over my mom buying me socks. I feel like a burden. Everything seems too delicate and temporary. I look out and see paper houses and paper trees, origami lives being smooshed to bits every now and then for no particular reason. My current situation is seeped in self-induced loneliness and death and anxiety over how short my life might be. I really wish I could say troop morale was better, but, war is always grim.

I want you all to know that the King is alive and well somewhere south of my bellybutton.




Maybe when I'm better I'll get him tattooed over the burn?