Heidi's Hot Flashes

White House or Bust

2009-07-01T21:20:00.000-07:00

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?

2009-06-09T07:26:00.000-07:00

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")

2009-05-21T13:09:00.000-07:00

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:

It's a non-competitive loop on the shores of Lake Ponchartrain. Ride a little, stop for some fresh catfish (breakfast of champions), ride some more, stop for some cheese grits, ride a little more, stop for some beer (aka "adult electrolytes." At 9 a.m. Hey, it's NOLA.) And then they won't let you ride anymore because you had a beer, so you just hang and enjoy the music and the awesome people around you. Like my new Twitter friends Jon and Johnna Binsted, who drove over from San Antonio to join us! (@livestrongtx and @johnnak on Twitter)

It happened to be the same weekend as French Quarter Fest, so the rest of the weekend was basically spent eating and drinking and listening to live music in the Quarter. And selling beer.

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

2009-04-07T13:30:00.000-07:00

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!

2009-04-02T12:42:00.000-07:00

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/

Say It With Me, People: CON-STI-PA-TION [Guest blog by JT]

2009-03-18T22:22:00.000-07:00

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]

2009-03-11T20:25:00.001-07:00

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?

Cancer: Free Ticket to the ER Express Lane [Guest blog by Winediva]

2009-03-02T21:14:00.000-08:00

There is SO much good writing on My Planet that I am going to start re-posting my favorite examples on the public blog. This by the wonderful Winediva.

And no, she didn't bribe me with any lovely bottles. Yet.

I'm still hoping.

Enjoy! ---HSA

Cancer: Free Ticket to the ER Express Lane [Guest blog by the one and only Winediva!]

It wasn't method acting. I play a stumbling drunk, but I rehearse perfectly sober thank you very much. I was shuffling around with a great big wooden box (go with me here - its theatre) and slipped and fell. Ow. Right on my left knee. I repeat. Ow. But it really seemed like no big deal at the time. I finished rehearsal, had a glass of wine, and soaked in the tub. In retrospect, this was a bad course of action. (Not the wine; that's always a good idea.)

If you ever take a tumble, even if you think it’s no big deal, apparently ice is the way to go within the first 24 hours. Heat brings more blood to the area and actually increases swelling. Well, whaddya know. By the end of a 6 hour rehearsal the next day, I could barely move. The stairs were a nightmare of pain and I felt like a complete tool. Fine, I'll ice this bitch tonight and it'll be fine. Oh no. No you don't Missy! The following morning I'm shuffling like the Tim Conway old man to the bathroom and totally freaking out. This is now a big deal. Dammit. I called my trusty preggers pal who is taking some time off and ask her to drive my ass to the ER. Luckily, she's game and doesn't make me feel guilty or imposing. She's a peach.

I am now dragging my left leg like Quasimodo in to the Emergency Room at Northwestern. Here's the thing about ER's for major trauma hospitals. You often see MAJOR traumas come through the doors. It’s a pretty freaky experience. Likewise, everyone in the waiting room looks like a Tim Burton movie. Dour and misshapen due to some horrific ailment that I'm sure I will catch by just sitting on a waiting room chair. It sucks. And, because folks come wheeling in with gunshot wounds to the head, you have to wait. And wait. And wait. You may have it bad, but dude, these folks are fighting for their lives this very minute. Gives you some perspective.

There is usually a peppering of crazy folks as well. Homeless loony tunes who have been discarded by the system and sit in corners waiting for a religious Good Samaritan to pick them up and take them to a shelter with a cot and a bible. It’s a really crappy atmosphere. To top it off, the TV is always tuned to Judge Someone who is presiding over a selected group of freaks fighting over $300 worth of vet bills or some such bullshit. I hate it. But here I am.

First thing they ask you in the ER is your birth date. It must be some quick way to ID you and figure out if you’re remotely lucid at the same time. Then you wait for the triage nurse to determine just how sick you are and where you fit on the wait list to see the doc. This is a person whose ass you should kiss. Big time. So, I politely answer all questions about my fall, dutifully have my temp taken and wait for the big question. “Have you had any recent surgeries?” And…here we go. “Yes, in May of last year I had surgery here for stage 4 colon cancer.” (Pause) She’s a pro. Collects herself in a mere second and goes on with the necessary questioning that is now required. I go through all the gory details, meds, treatments etc almost by rote now. I can spit out “six months of folfox with avastin” and such with complete detachment, like it’s what I had for breakfast. I get a wristband and a wheelchair and I’m in the queue.

She parked me in front of the TV. I know she meant well, but Judge Ethnic Ghetto instantly starts working my nerves. It wasn’t five minutes before they came and wheeled me into the bay of beds for care! Holy cow! I guess cancer puts you in the Express Lane in the ER. Well, hell’s bells.

One of the nurses comes in first, natch. She helps me wriggle out of my pants and put on the dreaded gown. I still can’t tie the damn things on my own due to my neuropathy. Grrrrrr. Next comes the Almost Doctor who pokes, prods, and asks more questions. Mostly, “Does it hurt when I do this?” And mostly the answer is “Yesdammitstopdoingthat!” I also get the “rate your pain on a scale of 1-10” thing. I hate that. I resist the temptation to be a smart ass and say “Ours goes to eleven.” ala Spinal Tap. If it didn’t hurt really freakin bad, I wouldn’t be here! “I see a lot of bruises here; tell me how you fell again?” I go through the whole story again. Wooden floor, giant box, slip and fall. “And you only fell once?” I assure him I did. I start to realize he’s working up the nerve to question me about domestic violence. Oh, lordy. And here it comes. “Everything you tell me is confidential, right” “yes.” “So, as we ask all of our patients this, I have to ask – did someone do this to you?” I recall the image of Marc sleeping every night in my hospital room for a week. Emphatically, I say “no.”

The nurse comes to visit again. She nonchalantly asks me if I know about their confidential domestic abuse counseling program, just in case I want to tell my friends. I thank her, but assure her I’m not in need. Now, I’m glad they screen for this kind of thing and I know abuse victims come in all walks of life, but I’m starting to get creeped out. Fix my leg!

Finally, Doctor in Charge comes in and checks out my gimpy limb. He does some different poking and prodding which hurts less and seems more productive somehow. I have to say all the docs and nurses and helpers I saw in the ER were fantastic about explaining what they were doing and why. It’s just a sucky experience, no matter how good the crew. Then Big Doc says, “If I ask you a question, do you promise to tell me the truth?” Oh, Mother of God… I nod. “Is anyone hitting you?” “No, doc. I just fell. I’m really clumsy.” As the words stream out of my mouth, I realize that I’m damn near quoting every Lifetime movie about abused women. “I understand that you have to ask, and I’m glad you do, but I just fell in a rehearsal and I seem to bruise really easily since the cancer.” I don’t think he’s convinced, but he moves on to my knee and it’s green and purple hue.

While I’m waiting for tests, a nice preppy-type guy asks me if I will participate in a survey to see how the hospital can better serve their cancer patients in the ER. Sure, what else do I have going on? He asks a bunch of questions about transportation to appointments, difficulty breathing, depression, and whether I think the doctors listen to me or not. As per usual, the questions seemed primarily aimed at geezer patients and not the 30 somethings. I told the guy about my frustrations that have nothing to do with wheezing and hailing a handicapped accessible cab.

After x-rays and much conversation, they docs conclude that I have no broken bones, there is no glaring cancer that may have spread to the bone, and that I just need an ace bandage and some crutches. Yea! I couldn’t imagine having to leave the play I’m in due to a stupid slip and fall. It’s the first productive thing I’m really enjoying post chemo and I would be devastated if I had to quit. It seems odd in retrospect. I was more worried about quitting a play than finding cancer in my bones. Weird.

I am dispatched with great care and well wishes, but I’m pretty sure they think my hubby is a raging maniac. I called my friend Sean to commiserate. I knew he’d say something funny and insensitive to cheer me up. “You should have said: No, my husband doesn’t beat me. I always have dinner ready right on time!” I burst out laughing in the lobby of the hospital. I knew I could count on Sean. Seriously. Last night, my husband fluffed a pillow under my knee, prepared an ice pack, poured me wine, and served me soup on the couch. Not exactly the wife beater type. Despite my bum knee, (and the whole cancer thing), I feel very lucky. I hope Marc doesn’t have to visit the ER anytime soon. They’ve got their eye on him.

Cyberchondriac Girls #2: This Time, MRIs and Feminine Hygiene. Be Afraid. (Guest Blog by Elizabeth)

2009-02-10T23:30:00.000-08:00

No intro. Just jump right in to the warped and hilarious world of one of my awesome Cyberchondriac Girls, Elizabeth:

Hi girls!

I believe I may have reached a new low tonight. Or high, depending on your perspective. I had to get an MRI on my aching, arthritic hip, just to make sure it's not some advanced metastatic bone cancer before I start PT next week. My self-diagnosis came from Healthypet.com: it must be hip dysplasia, as in the disorder suffered by my childhood Labrador retriever.

Anyways, I'm terribly claustrophobic, so demanded sedation. The poor tech tried to talk me out of it, saying that I'd had scans in 2001 and 2002 without meds; it was only 2004 onward that I required sedation. I didn't tell him that I scored my own tranquilizers back then, before I realized you could get better ones at the scan center. I have to give this guy credit as he was very, very thorough in going over the questions about my health, potential metal objects in my body, etc. He perked up when I mentioned my cervical cancer from 2001 - this apparently elevated the whole experience to require a gross contrast dye. He was satisfied that I didn't have any intra-genital piercings, so he left me to drift off to the fourth dimension.

Then…I started to panic. When we discussed foreign objects that might lurk within my body, I'd neglected to tell him that I was at the end of my period and was still using a tampon. I really fretted about this as I became less and less lucid. What if that string contains microscopic metal particles? Could I really trust Playtex to ensure that nothing attracted by magnets is in those things? I almost jumped out of the bed when he finally reappeared (good thing they use rails), asking what he thought the risk was. I had visions of tiny metal pieces being forced into my uterus and God knows where else. It would be just like the Dalkon Shield IUD burrowing its way into my pelvic cavity, but impossible to detect. He looked a little taken aback, to say the least.

I insisted that he let me go to the bathroom to remove the potentially lethal feminine hygiene device. His female co-worker wouldn't look me in the eye ... she probably thought I was right, but didn't want to appear too paranoid. You know how it is. By this point, I had some slight difficulty walking in a straight line, but my mission was accomplished. To the best of my knowledge, no metal invaded or exploded out of my body.

Always be on the lookout. Danger lurks everywhere, even if nobody online has raised the issue yet. Tampons have been proven to kill in the past (Toxic Shock Syndrome, anyone?).

Cheers -

Elizabeth

USA Today article features several Planeteers!

2009-02-09T23:00:00.000-08:00

Check it out, guys! Liz Szabo of USA Today interviewed several of our members for the following story: "Cancer Can Bring Out Just the Wrong Words."

There's even a photo of our lovely Carrie! w00t!

Carrie Morse, left, and restaurant owner Reem Azoury share a few laughs at Figs Fine Foods in Washington, D.C.

It's a topic that has spawned thousands of postings here on Planet Cancer. Mostly incredulous stories of "I-can't-believe-they-just-said-that."

If you have friends or family who just can't seem to get their feet out of their mouths, here are a couple of book suggestions to pass along from our friend, author Dr. Wendy Harpham: 20 Things People With Cancer Want You to Know, by Lori Hope, and The Etiquette of Illness, by Susan P. Halpern.

Among other advice in the article, here's the sidebar with specific and constructive suggestions for what you SHOULD do:

ACTIONS THAT SPEAK LOUDER THAN WORDS
• Show empathy. The National Cancer Institute's Julia Rowland suggests, "I'm sorry to hear that you're dealing with cancer," or, if appropriate, "I'm sorry the cancer has returned."

• Don't forget them. People with cancer often are cut off from friends while in the hospital or recuperating at home. A call, card or even an instant message help them feel remembered, especially on special days like birthdays, says Paul Boyle, 33, a cancer survivor from Jacksonville, Fla.

• Offer specific help. "Let me know if I can help" is so vague that the person with cancer is unlikely to ever take up your offer, Rowland says. Instead, ask if you can do something specific: drive your friend to appointments, babysit the kids, mow the lawn, shovel the walk, clean the house, call doctors or make appointments, update a website with your friend's health news, cook a meal on a particular day or organize friends to bring a different meal each day of the week.

• Talk about something other than cancer. Many people get tired of talking about chemotherapy or blood counts. Talk about the same subjects that always interested you, from sports to current events, says Jimmie Holland, author of The Human Side of Cancer.

• Make them feel they're still one of the gang. Boyle's co-workers knew his sense of humor well enough to use humor when welcoming him back to work after chemotherapy last summer. Knowing that he would be wearing a bandanna to cover his bald head, everyone else in his office also showed up wearing one. "It was nice to know I wasn't being treated any different than before," Boyle says.

• Celebrate survival. "Everybody's first instinct was, 'Oh my gosh, I'm sorry,'" says Dan Waeger, 26, of Washington. "But when I told a stranger in a cab that I was a three-year lung cancer survivor, the reaction was, 'That's awesome. Congratulations.' That's the best reaction I've gotten."

My Mammogram: A Photo Entry (And Twitter Feed)

2009-01-23T10:30:00.000-08:00

So I had my annual booby-squashing this morning, and since I have recently become a Twitter addict (follow me @heidisa) I thought it would be funny to "live tweet" it, which basically means posting a running commentary to Twitter on the action. (It's nothing compared to the Austin woman who recently live-tweeted the birth of her child, but whatever. We all do what we can.)

So...here goes:

8:50 a.m. Heading in for my annual mammogram like a good little cancer survivor. Didn't have breast cancer but it's all part of the survivorship pkg.

9:20 a.m. Wearing my Crazy Sexy Cancer Goddess tshirt to my mammogram. [a gift from my wild child sister Kris Carr--get your own here.] The nurse saw the movie and she loves the shirt! Swapping for a robe now.

9:25 a.m. Less a robe than a sassy little cape.

9:30 a.m. The Booby Smusher! But Nurse S. is ever so gentle. Before she flattens my ta-tas into pancakes, that is.

9:50 a.m. Portrait of a Boob. Looks clean to me, but I'll find out in a week. Not bad at all. Thanks Nurse S!

10:00 a.m. Crazy Sexy Planet Cancer Goddess post-mammogram. Go do it, tweeps!

I don't particularly like getting mammograms. Although they aren't physically painful, they are just another reminder of cancer being shoved in my face. That said, I believe in being a proactive guardian of my own health, especially given my genetic cesspool of a cancer family.

So I will continue to have mammograms and Pap smears every year. I'll get my heart and kidneys and skin checked out to make sure I don't have any terrible long-term side-effects from my own cancer treatment.

And although I might grumble, especially when I pay the bills, I know that I'll sleep easier at night having (fingers crossed, knock on wood, throw salt over left shoulder) kept the cancer boogeyman at bay for one more year.

Check out my video interview with ACS's David Neff about My Planet!

2008-12-17T12:00:00.000-08:00

David Neff is the interactive guy for the High Plains region of the American Cancer Society, based out of the corporate office here in Austin. Besides working hard to introduce social media to the ACS, he is an awesome and tireless supporter of all things non-profit. I met him when we were both on a panel for a non-profit conference, where he was showcasing a local project using Twitter to successfully get folks out for blood drives. (And yes, I am now on Twitter. I'm kind of addicted, actually. Follow me @heidisa!)

I recently went to visit him at the ACS mother ship. How do you like the greeters at the front desk?

Umm...yeah. Maybe not the optimum first sight for a newly-diagnosed cancer patient.

Once I recovered from "the girls," we met with Andrea, the ACS High Plains Region program person to learn more about ACS programs and talk about ways that we could possibly work together better to help young adults. There are some interesting opportunities through their massive call center operation (based here in Austin), their program that funds lodging when patients have to travel, and their clinical trial navigators. Nothing concrete, but the door is open and the conversation is started, so we'll see what happens.

I also got a tour, including the studio for Dave's pet online project, Sharing Hope TV. Then he took out his funky little Flip video camera and ambushed me with the video interview. ("Ambush" status explaining limp hair and lack of makeup.)

Click here to go to his blog on non-profit innovation and see the video, which basically talks about My Planet and how we use it.

Word of warning: don't be afraid of my oddly large-looking hands. (Nice camera angle, Dave.)

Anyone wants to give him props (or give him shit about his camera skillz), he's on Twitter: @daveiam

Enjoy!

Radioactive, Rock & Roll, Radass Leela

2008-12-03T21:37:00.000-08:00

CHECK OUT this video from our lovely Leela, showing exactly what it's like to....well, be a radioactive thyroid cancer patient. Geiger counter and all.

Is she a total rock star or what?! :-)

I'M FURIOUS. Please read and lend your support to this soldier with leukemia!

2008-11-24T19:38:00.000-08:00

I just finished reading the most offensive news article I have ever seen, courtesy of the San Antonio Express News. For those of you who don't know, San Antonio, Texas, is home to Lackland Air Force Base, an enormous military installation where they train many new recruits.

According to the article, 21-year-old Airman Basic Joseph Weston had the audacity to be diagnosed with leukemia a couple of weeks after starting basic training. Clearly, he's too sick to continue with boot camp. But an evaluation board ruled that his leukemia was a pre-existing condition, which means he gets an administrative discharge, which--you guessed it--makes him ineligible for medical and retirement benefits.

It gets worse: According to the article, "The ruling came despite the opinion of an Air Force cancer specialist who said there was “absolutely no way” to prove that Weston came to Lackland sick. The case is being appealed, with Weston fighting to win a discharge that grants him continued medical care and possibly even a pension."

The newspaper obtained a letter from the military oncologist treating Weston that says, according to routine physical exams, he had a normal amount of blasts in his bone marrow when he came to the base to start basic training.

So this poor kid finally decides to turn his life around by following in his grandfather's and father's footsteps and joining the military. (Which, by the way, delayed calling him up for five months. So much for the suspicion that he joined to get treated for his leukemia--he'd pretty much have been dead.) Now he's got leukemia, his dream is dashed AND he's being booted from the Air Force with no medical coverage. As so many of us know, there's no way in hell he'll ever get any other kind of medical coverage now--except, possibly, Medicaid, but they don't know about that yet.

This, while, according to Weston, other recruits with stress fractures and anxiety attacks are being given medical discharges.

It gets still worse. While Weston is being treated for his leukemia, he is in a medical holding squadron, along with airmen who flunk drug tests and the walking wounded. He lives in a windowless 10x10 cell and is still subject to the discipline in other training units, such as a 4:45 a.m. daily wakeup call and marching to the dining hall in formation. According to the article: "For a while he was denied the right to read books other than the Bible. Once, he was chastised by a noncommissioned officer for resting his eyes after grueling chemotherapy treatments." Although the article goes on to say, "He has since been allowed to read and sleep during the day, in accordance with doctors’ orders." Well, isn't that sweet of them.

There are a lot of comments following the article. Many people think medical coverage is okay, but he doesn't deserve the retirement benefits.

We just hope he lives long enough to worry about that.

If you'd like to let Lackland know what you think about this, you can contact the 37th Training Wing Public Affairs office by calling (210) 671-2907 or e-mailing at Publicaf@lackland.af.mil.

Still riding high after the LIVESTRONG Young Adult Alliance meeting!

2008-11-17T23:30:00.000-08:00

Whew.

I’m just now coming down from the 3rd annual LIVESTRONG Young Adult Alliance meeting here in Austin last week. It was so great that, after it was all over, I felt the post-event blues that happen after the best weddings. You know, when all your favorite people are in one place and you have this amazing shared experience rallying around a single unifying event, then everyone breaks up and heads back to their homes and lives and reality. Sigh.

I’ll recover, I promise. If for nothing else than to get my ass in gear and working on the monumental challenge we have set ourselves. I'm proud to be the Advocacy co-chair of this incredible group, and take that leadership responsibility very seriously.

To give you some background, the Alliance is a mere toddler in the world of organizations, albeit a precocious one. The idea was birthed in 2004. Subsequently, on the heels of a national scientific meeting hosted by the Lance Armstrong Foundation and the National Cancer Institute in 2006, the Alliance was formally organized as a national coalition (supported by the LAF) to implement the recommendations that came out of that scientific meeting.

There were 44 member organizations when the first Alliance meeting was held in 2006. And now, here we are in 2008 with more than 100 member organizations---advocates, medical institutions, professional organizations, government agencies—all coming together to improve survival rates and quality of life for young adults diagnosed with cancer between the ages of 15 and 39. Check out the member list here.

Lance Armstrong Foundation CEO Doug Ulman kicked us off on Thursday morning with an incredibly personal talk about his own cancer diagnoses (three times!) and growth as an advocate. He challenged us with the idea that if we weren’t setting unattainable goals, we weren’t living life as it should be lived.

Doug is a tough act to follow on any given day, but Olympic swimmer Eric Shanteau was up to the task. He spoke next about his own diagnosis mere weeks before his Olympic dream was to come true, and the struggles he faced with the decision to treat immediately or wait, as well as his challenges in coming to terms with survivorship and moving on. His (apparently even more amazing) dad, currently fighting Stage IV lung cancer, told him "Eric, you have cancer. Cancer doesn't have you." A five-month survivor at this point, he spoke eloquently, displaying that accelerated wisdom that often comes with the loss of innocence at the hands of this disease.

Pumped up and inspired, the group dispersed into breakout sessions ready to learn and to work hard. Thursday morning was dedicated to breakouts providing member organizations with useful information to take back to their young adult constituency, such as:

• Resource sharing
• New media projects and tools
• Clinical trials information: new studies, avenues of access, legal info and Institutional Review
Boards (IRBs)

Thursday afternoon was devoted to work within the four task forces: Standards of Care, Science, Awareness and Membership. Each task force reviewed accomplishments in the past year and discussed the work to focus on in 2009, including:

• A huge, honkin’ retrospective analysis of relevant studies to see where young adult data can be pulled out and analyzed for different results when considered by age. (The thought is that cancer is biologically different in young adults and may require different protocols. Current studies in breast and colon cancer suggest this, but we need more evidence to prompt more targeted studies.)

• A working meeting to establish model standards for a quality Adolescent/Young Adult program—not just your basic teen room plopped onto a pediatric ward, or a computer set up in the janitor’s closet on the adult ward. (Right?!)

• An awareness campaign targeting frontline docs—such as gynecologists, college health professionals, family doctors, orthopedic docs, etc.—who are a huge factor in the problem of young adults being the most likely group to suffer a delayed diagnosis.

So after all that work, this group brought their A-game to playing hard Thursday night! We had a dinner cruise on a Town Lake party boat with---drum roll—karaoke. Which is, by the way, my extreme phobia. Can’t do it, no matter how much alcohol is involved. (And believe me, there was a lot of that.) But there were some talented folks there and I am an enthusiastic backup singer. :-)

Friday morning was devoted to wrap-up, then we closed with a fantastic session in unity and working together led by Drum Café. (I heard afterwards that the Hyatt staff was freaking out---120 African drums being pounded in unison make quite a ruckus.) I’d never done a drum circle before and I have to say was rather skeptical, but it was SO COOL and I would do it again in a heartbeat. Hangover notwithstanding.

Looking around me at the passionate and dedicated people in the room, all of us beating drums in unison, I was overwhelmed with the feeling that these people had my back. We all come at the problem in different ways, addressing different needs and challenges, but in the end we all want the same thing: to make the world better for young adults with cancer. And until there is a cure, to make their lives better from start to finish.

Hell, yeah. Let the ruckus begin.

How does your cancer look translate into Halloween costumes?

2008-10-28T20:00:00.000-07:00

I remember Halloween while I was on treatment. It was a banner year in the movies for bald and sick characters. I was trying to decide whether I should be:

a) Tom Hanks in Philadelphia, dying of AIDS.
b) a Holocaust survivor from Schindler's List, dying from Nazis.
c) Debra Winger from Shadowlands, dying of bone cancer. (Which, by the way, I didn't know until I was trapped in the middle aisle during a sneak preview, not two months after being diagnosed with---yes, bone cancer.)

This year I will go as the Slightly Tipsy Suburban Mom escorting mini-Captain America and Bumblebee the Transformer door-to-door.

What about you guys? Who's going to turn their cancer look into a shining example of costuming creativity? Fashion icon? Movie star?

Post photos if you have 'em!

Me (un)dressed as a Neiman Marcus mannequin.

Defining Our Community of Support

2008-09-30T15:00:00.000-07:00

Hi everyone—

First of all, to clear up any confusion and calm the hysteria: We have NOT implemented a blanket ban on friends and family members of young adult cancer patients/survivors. As of now, My Planet is STILL OPEN TO ALL USERS OVER 18, including friends, family members and healthcare professionals.

We have, however, removed several individual members’ accounts—people who happen to be family members of cancer patients. Let me be very clear that our action was not arbitrary. It was prompted by specific, unacceptable and off-topic content that clearly ran counter to the mission of this community, which is to provide a safe haven for young adults with cancer in their 20s and 30s to share their experiences, thoughts and feelings.

While we appreciate that many besides the young adult patient may find My Planet helpful, our loyalty has always been and will always be, first and foremost, to maintaining the integrity of our community for the young adult with cancer. While contributions from friends and family members can certainly be helpful, a line is crossed when Planet Cancer becomes the place for the non-young-adult patient to air their anger, disappointment or grief, or in some way attempt to work out their own personal issues—cancer and non-cancer related—in our forums. There are other, more appropriate resources for this kind of assistance. As for My Planet, this dynamic is inappropriate and detrimental to the community and its purpose; which is, again, to allow young adults with cancer to support each other.

It is our ongoing and very difficult task to monitor and respond to our members’ concerns to make sure that lines are not crossed and content remains relevant and helpful to the community as a whole.

While the site currently remains open to all users, at the request of many of our members, we are examining that policy and it may change in the future. As we’ve said before, this is an evolving community and we adapt as we grow according to the needs of the population we were created to serve. What is fine in a community of 50 members may become unworkable in a community of several thousand.

For now, I would ask that everyone please take a moment to review the House Rules below. I have highlighted sections that are particularly relevant to this discussion. They have served us well since 2001, and I think that if we all use common sense and act in a spirit of support and mutual respect, we CAN keep this community operating in the spirit for which it was intended.

As always, thank you for your concern about our community, and for your understanding.

Best,
Heidi

House Rules

Welcome to Planet Cancer! We want your experience here to be enjoyable, meaningful, and safe. So that this forum remains a great place for all us young adults to share, please abide by the following rules, which are mostly a matter of common sense.

1. Respect everyone and be responsible.
We come from hundreds of different backgrounds with different experiences and feelings. People choose a variety of paths in life, and we hope that everyone can feel comfortable sharing aspects of their own paths. Respect your fellow forum-goers and what they have to say. Personal attacks will not be tolerated. You are responsible for the contents of your posts. Express yourself in whatever way you want, but if we deem your post exceptionally objectionable, we reserve the right to edit or delete it.

2. Respect the purpose of the forum.
Planet Cancer exists to provide a community of peer support for young adult cancer survivors over 18 years old. If you are not a survivor or immediately involved in the care of young adult survivors, please refrain from using the forum. While we value the perspective of friends and family members, we reserve the right to moderate the contribution of individuals who are not young adults with cancer, on the basis of whether their contributions are helpful and constructive for the community. Contact the site administrators at contactus @planetcancer.org if you are unsure about posting.

3. Do not give medical advice.
While everyone is welcome to share their personal experiences relating to their cancer, treatments, side effects, etc., do not offer medical advice on these forums. For example, feel free to share how well a treatment worked for you, but do NOT attempt to persuade someone else to follow the same treatment. Everyone responds differently and what worked (or didn’t) in one patient is not an indicator of how it will (or won’t) work for other patients. Asking someone to see their doctor is not medical advice.

4. Do not promote your product.
If you have a commercial product you think could be valuable to the community, contact the site administrators by email. Any posts suspected of promoting "miracle cures" will not be tolerated. There is a fine line with regards to complementary and alternative medicines, many of which are valuable for cancer patients, but we reserve the right to make those distinctions. Keep requests for donations to your personal page.

5. Do not flood the forums with similar posts.
One is usually enough, folks. If you want everyone to read it, post in one of the general forums instead of the sections for specific cancers.

6. Moderators’ decisions are final.
If you have concerns, please notify us in email rather than on the forums. While the moderators keep an eye on the forums, it is impossible to review the content of each message as it is posted, and inappropriate messages may not be immediately removed. We reserve the right to delete any message at any time for any reason or no reason at all.

Rules are subject to change at any time as needed. Views expressed in postings are those of the individual and are not necessarily those of Planet Cancer, its staff or volunteers. We cannot guarantee the accuracy or validity of any message. These message boards are not meant as a substitute for the advice of a doctor, therapist, or other trained professional.

A Challenge for You: What are the Most Ridiculous Depictions of YAs with Cancer in Pop Culture?

2008-09-29T20:30:00.000-07:00

Think perky little Mandy Moore in "A Walk to Remember." Think of Dr. Green and his brain tumor on "ER." Think Debra Winger in "Terms of Endearment." Think "Wind Beneath My Wings."

We're looking to compile a list of the most ridiculous pop culture depictions of young adults with cancer for the Planet Cancer book, and we could use your help. And by "ridiculous," I mean over-the-top, mawkish, underplayed or just flat-out wrong. (I mean, Mandy had terminal cancer but still looked sooo cute and had all the energy to perform in the school play, tutor underprivileged students and innocently seduce her new BF.)

More important than pop culture familiarity is the ridiculousness of the depiction. The best (worst?) ones usually turn up in forgettable ABC after-school specials and bad late-night Hallmark, WE or Lifetime movies, which we KNOW that you all have spent way too much time watching!

Bring it on! We promise not to make fun of you for it.

Best,
Heidi

Thanks to you, pediatric nurses love YA patients!

2008-09-27T22:30:00.000-07:00

Hi, everyone--

Thanks so much for the stories and words of wisdom. I used them all, and they loved it! (Lindsey, I turned your list into "Lindsey's Top 10 Pieces of Advice for Nurses." They were hysterical!)

I spoke for about an hour to a ballroom full of probably 600 nurses, and you could just see the lightbulbs going on all over the place. It's crazy how it seems so obvious to all of US how people with cancer in their 20s and 30s are playing a totally different ballgame, but it hasn't even crossed the minds of so many medical professionals.

See, when 9 out of 10 patients in either a pediatric or medical oncologist's office are under 14 or over 40, respectively, is it any wonder that no one ever thinks of those random young adults as a group or a community? And not just a group, but a group with unique needs, issues and challenges

But once they hear it, they GET it. And then, hopefully, they'll go home and think differently about that next YA patient who walks onto their floor.

Honestly, though--it's not the pediatric folks who need to be convinced. We need to get the adult oncology community on board to really move the needle on this one. So we'll keep pressing on!

Thanks again, guys. You made me look good. :-)

Home tomorrow. I'll be like a salmon swimming upstream in the airport, fighting the departing visitors from Austin City Limits music festival. ;-)

Best,
Heidi

Need words of wisdom for nurses!

2008-09-26T21:30:00.000-07:00

Hey, everyone!

I'm giving the closing keynote tomorrow at the national meeting of pediatric oncology nurses here in Albuquerque. Any stories, advice or words of wisdom that you would like me to share with a convention center ballroom of nurses? Particularly if you were treated in pediatrics, which can be challenging for young adult patients, to say the least. All those tiny toilets, you know....

Best,
H.

P.S. Aren't you impressed that I can spell Albuquerque? AlbuquerqueAlbuquerqueAlbuquerque.....

Standing Up 2 Cancer. Next to Charles Barkley.

2008-09-12T19:30:00.000-07:00

So I had the privilege of attending the Stand Up 2 Cancer live broadcast at the Kodak Theater. (Side note: did you know that the Kodak is built onto a friggin' MALL? I'm not kidding. So weird.)

My friends Julie Dresner, Teal Thompson, Jennifer Ippolito and I joined representatives from 100 other advocacy groups for a luncheon, pre-show rehearsal and then the actual show. All the advocates wore t-shirts representing their organizations. It was a veritable rainbow of slogans and colors, representing issues, diagnoses and subgroups across the cancer spectrum. I'm not biased or anything, but our t-shirts were the coolest. :-)

Julie and I! Her grounded approach to cancer is one we ALL could learn from. Our T-shirts: "I had cancer and all I got was this stupid t-shirt." and "Planet Cancer: Just like Animal Planet, but with less hair."

Teal Thompson, former Austinite and good friend, now back in L.A.

The pre-show rehearsal was really fun. Lots of celebs milling around onstage by the phone banks figuring out their positions and rehearsing lines for their own individual bits, along with stand-ins for the more illustrious or otherwise-tied-up celebs.

Yes, Jennifer Aniston is still gorgeous in her cutoffs and no makeup. As is Scarlett Johanssen. And Jennifer Garner, who is QUITE preggers.

Kris Carr was on the celeb phone bank as well, sporting her snazzy "Crazy Sexy Cancer Goddess" t-shirt (I must have one of those). I posed as her publicist so she could sneak me up to the 5th floor to do some star-stalking on the press gauntlet.

Of course I'm a dork. I was gawking at Goran Visnjic, the hot Croatian doc from ER, and Kris elbowed me with the reminder: "Okaaaay, if you're my publicist we don't POINT." Duh. So I knew, when we got in the elevator with Julia Louis-Dreyfus, to respond with a nonchalant shrug when she asked if we knew where the green room was. And not to point. :-)

Then it was showtime! There was an amazing feeling of anticipation when the house lights went down and the music came up, and when Patrick Swayze walked out onstage, the place just exploded. Then Katie Couric, Charlie Gibson and Brian Williams were all standing there together, representing all three major networks who were simultaneously broadcasting the show.

The highlight for ME, of course, was that in the middle of this jam-packed, hourlong broadcast, with all the complex information that had to be conveyed, young adults got our moment in the national spotlight. Our gorgeous rock star Rachel Ainsworth stood up there and told the nation that she was a two-time lymphoma survivor diagnosed as a young adult. That "No one expects you to get a life-threatening illness in your 20s. Everyone thinks you're invincible."

And then John Krasinski (who plays Jim on "The Office"---LOVE him!), standing next to her, said this:

"Young adults with cancer sometimes fall through the cracks. The odds of a young adult surviving cancer haven't improved in 30 years. Don't allow them to become cancer's lost generation."

I thought I was going to jump out of my seat!! (Watch it here.)

I'm as cynical as the next person most days, but there was something about everyone, all together under one roof, participating in an event that was broadcasting into millions of homes and drawing a line in the sand, saying: "This is where the end of cancer begins."

It gave me shivers. And, I have to say, hope.

You can do a lot with $100 million, especially if the parameters set for the "Dream Teams" doing the research succeed in breaking down institutional silos and competition. (For where the $$ goes, click here.)

We'll see. We very well will see.

Oh, and while I was floating up there on Cloud Nine afterwards, I met Sir Charles Barkley, the Round Mound of Rebound Himself! He's from small-town Alabama, too, so we got along juuuust fine.

Idaho? No, WE-da-ho(s). For Olympic gold, that is!

2008-08-17T20:30:00.000-07:00

So Courtney and I were sitting in the San Francisco airport, on our way to the Planet Cancer/First Descents couples kayaking retreat in Idaho. (Because clearly the most direct route from Austin to Boise runs through San Francisco.) There we were, at Gate 77B for the third time, when a handsome young high school dude in a Stanford sweatshirt turns to me and asks shyly, "Are you Kristin Armstrong?"

"The cyclist or the ex-wife?" I asked. Not that I am either, of course, but I wanted to be clear on whom I was being mistaken for.

"The cyclist," he replied. "She lives in Boise, and my mom said she was coming home from Beijing on our flight and that she has blonde hair."

Well, that piqued our curiosity, so we started scanning the crowd. In two seconds, we had homed in on the petite blonde with the Olympic t-shirt and the Chinese tassel hanging from her Olympic backpack. (We're quick that way.)

Courtney Who Knows No Fear jumped up immediately and waltzed over to her, as Ashlee the photographer and I maintained our cool, "What Olympic gold medalist?" posture. Next thing we know, Courtney is walking back over WITH KRISTIN ARMSTRONG. She had told her that we were headed to Boise for our Planet Cancer retreat and asked if she would come take a photo with us that we could post on the website.

She was amazing! We talked for a long time, and she let us hold the gold medal. (It's really, really heavy.)

And being the overachievers we are, we couldn't do just any normal photo. Voila.....ARMSTRONG'S ANGELS!

What a fantastic start to what promises to be an absolutely amazing week. Stay tuned for more news from the retreat!

You KNOW you want to go to a Planet Cancer retreat! [a photo entry]

2008-08-12T21:30:00.000-07:00

Maybe you've thought about applying and dismissed the idea: too far, too long, too expensive, don't want to sit around with mournful cancer people and sing Kum-Ba-Ya, can't go alone, you're too sick, or it's just too big a pain in the arse to get your doc to fill out the paperwork to apply for a Planet Cancer retreat.

Whatever!

It's FREE, it's not too far, you can do anything for a weekend, we have travel scholarships available, Kum-Ba-Ya is banned, we have medical staff, you can meet other folks beforehand right here on My Planet---and don't even TRY to pull the paperwork excuse on us!

It's just....fun. I know how that sounds. But there's something refreshing about spending a weekend with people where you don't have to give the backstory or the explanations, because they are in the same boat. So you come in and are able to just let out a deep breath and ENJOY the activities and the sessions that we put out there for you.

And if you don't want to do a damn thing...well, that's fine, too. Your call. I promise you that it's not "all cancer, all the time." We just want to give you a break, and the opportunity to meet some cool people who very well may become your lifelong friends.

But, enough words. Take a look! Then go download that application RIGHT NOW and send it in.

We can't wait to meet you. :-)

Get Your Drug On

2008-08-01T22:00:00.000-07:00

So here's a lighthearted game for you guys over the weekend: it's the latest in pharmacological entertainment----click here to play Get Your Drug On! [Cue Bob Barker and his theme song.]

I just invented "Heidzac."

Admit it--you've always wondered how they got those names. I mean, really. Zofran, anyone?

PC Age Guideline Explanation

2008-07-25T15:30:00.000-07:00

Hi, everyone—

So, it’s one of the perils of a growing, evolving organization that we have to evaluate situations when they come up, and decide on a response that best protects the integrity and purpose of our community and our organization. Such a situation recently occurred with the growing presence of younger teens between 13 and 18 years old joining My Planet; both cancer patients and children of cancer patients.

We spent a lot of time discussing this and seeking advice from every angle: psychosocial, emotional, practical and legal. We also spent a lot of time looking for alternatives and options, so that no one would be left without emotional support in these difficult circumstances.

Here are the primary concerns:

1. There is explicit content on this site, including detailed discussions of sexual issues, lifestyles and drug use, that is not appropriate for minors.

2. The purpose of the My Planet community is to provide a safe place for peer support where people with cancer in their 20s and 30s can get information, talk openly and support each other through their shared experiences. The presence of younger adolescents—particularly non-cancer patients—may cause people to alter, consciously or not, what they are willing to share, in order to “protect” the young ones. Think of it this way: you wouldn’t bring your child to an in-person support group at the hospital, both because you wouldn’t want them to hear some of the details shared, and because it would impact what people in the group would be willing to share in front of them.

3. There is a heavy burden of additional responsibility (both moral and legal) that comes with open channels of communication between minors and older members in order to protect the minor, particularly if either is vulnerable and in a state of emotional crisis, as many of our members may be.

Our primary worry about restricting use of My Planet by younger teens is that they would be left out in the cold, with no other resources or support for them. However, we have found several very good resources for both teens with cancer and teens who have parents with cancer—online gathering places that are age-appropriate and specifically created for teens so that they, too, can have open discussions with their peers about their own thoughts, fears and experiences.

For teens with cancer:
Group Loop (www.grouploop.org)
Teens Living With Cancer (www.teenslivingwithcancer.org)
Starbright World (www.starbrightworld.org)

For teens whose parents have cancer:
CancerCare (www.cancercare.org)
Kids Konnected (www.kidskonnected.org)
Cancer Really Sucks (www.cancerreallysucks.org)

At the end of the day, Planet Cancer was founded with the mission of serving young adults with cancer in their 20s and 30s. We realize that we cannot be all things to all people, so we make every effort to support and refer to other organizations that fill in the gaps and provide services that we cannot. With all that in mind, we have decided to bring our online community under the same age guidelines we have always had for our weekend retreats, and to clearly set the minimum age for participation in our online community as 18 years old.

My goal with this message is to be as transparent as possible about our thought process, so that everyone knows why we have reached this decision and why we think it is the choice that will best protect the purpose and intention of this amazing community.

Thanks for your support and understanding.

Best,
Heidi