Heidi's Hot Flashes

Meet my Cyberchondriac Girls!

2008-02-20T20:51:00.000-08:00

One of the little known long-term side effects of cancer is "cyberchondria." It's a tendency to self-diagnose with a multitude of illnesses, based on obsessive internet research following symptom onset. Of course, the doctors don't understand. But ONE DAY THEY'LL SEE. They'll see that I WAS RIGHT ALL ALONG.

After all, you knew something was wrong the first time, right?

No one believed you, but then it was cancer. So, in a way, cyberchondria is a protective mechanism to keep us from getting hit by that truck again.

Here are my beloved fellow Cyberchondriacs (minus Stacia, who's out of state, and Liz, who had to run to...a doctor's appointment? Either that or she was picketing the local branch of CPL because they keep billing her $2.37 on an insurance policy that's been out of date for six years). The photo is from my birthday lunch, as I proudly display my (very appropriate) gift: The Complete Manual of Things That Might Kill You:

Can I just say how much I love these girls!? We validate each other's fears and support every attempt to get that test/scan/labwork, because...well, it's just therapeutic to take things to the worst possible scenario and then realize that your flesh-eating bacteria was just an infected pimple. An exercise in perspective, you might say.

A sampling of one of our email conversations:

Liz: Okay ladies - here are some delightful hypochondriac bloggers, masquerading as anxious depressives, who might be our soulmates. My favorite blog title? I think it's my spleen ... The Blog for Hypochondriacs. After all, if it tingles, it must be cancer.
Another clever one is Confessions of a Hypochondriac. This woman wants to organize the Hundred Hypochondriac March & Rally. Beautiful in its simplicity, no?

No matter how fetching these titles and entries are, I think our collective writings are far more sophisticated and entertaining. I look forward to your entries in the PC blog about the as-yet undiscovered illnesses stalking each of us, every single day.

yours in over-active imaginings - Liz

P.S. - I've been having headaches, which is quite unusual for me; imagine my delight in connecting my recent trip to England to the eyeball-exploding pain. I had one bite of a very rare steak. Of course, Creutzfeld-Jakob disease, a/k/a Mad Cow. Early symptoms? Insomnia, memory loss, depression, anxiety, withdrawal, fearfulness, and .... headache. I'm done.

Stacia: “Shut up brain or I’ll stab you with a Q-tip.” This is brilliant!!! Liz, sorry to hear about mad cow disease invading your body. Please be in touch before the hysteria takes over.

Jenny: From the "I think it's my spleen" blog:

“I've had some really good months since I left the house. I actually got bitten by two fire ants recently and, surprisingly, I didn't die. Of either the bites or panic. It wasn't the best few hours of my life, waiting for impending doom, but I got over it.”

From my real-life weekend:

I was bitten by fire ants Saturday afternoon at ACL [Austin City Limits music festival] and ended up leaving Zilker Park in an ambulance. Thankfully I didn't die from the anaphylactic shock, or the panic. A pure shot of adrenaline seems to help with both of those conditions. In case any of you hypochondriacs ever need it, I now carry some in my purse. Liz, maybe it can stave off the Mad Cow for a while, come on over and we'll give it a try.

Man, I can't make this stuff up!

Liz: Oh yeah, this is GOOD!!!! Maybe you were in the ambulance I saw leaving? So, you have an Epi-pen now? I got one after I had a systemic reaction to a penicillin-class antibiotic last year that was prescribed for the flesh-eating bacteria infection on my face - my reaction obviously wasn't as serious. I didn't feel like going to Brack, so I waited a few hours until my internist was available. You can imagine how happy he and the dermatologist were. L-I-A-B-I-L-I-T-Y.

Ahhhh, the power of shared imagination. Bring it on, folks---join the Cyberchondriacs! We're waiting to hear from you and, yes, to tell you that we believe you even if no one else does. :-)

Life and Death and Life. For Leigh.

2008-02-06T10:07:00.001-08:00

This blog entry is excerpted from an email dialogue between me and my friend Jason about death, a topic that I think is exceptionally important to bring out of the shadows and into the light, especially here on Planet Cancer.

Hey Heidi, I got home from yoga tonight and opened my email to find that a friend, somebody I wasn't particularly close with, but who I spent a week with at Camp Mak-A-Dream, passed away last week. Her name was Holly Young and a year ago when we met she was in treatment, but one of the brightest, spunkiest, hardest fighters there ever was. I am just sitting here crying and I'm so angry...it's not that I was close with this girl, but she wanted to live and was a positive-thinking fighter and it just feels so wrong…

How do you deal with this knowing so many young adults with cancer? It just makes me feel so mortal. It's like I am doing everything I possibly can, have access to the best possible care and support, but it just kills me because so did Holly.

Jason

-----

Hi, Jason--
Wow. You know how to pull out the tough ones, don't you?! And your timing is uncanny because I'm working through a loss of my own right now that has really hit me hard: my wonderful friend Leigh died a few weeks ago. She was in her 40s; a singer and actress with a wickedly twisted sense of humor and a way of making every single person who came into her sphere feel special.

So, let's see if I can bring my half-formed thoughts into something that makes sense, for both of us.

I met Leigh through her boyfriend Scott Barber, who was our artist-in-residence at some of our earlier weekend retreats. Scott had recurrent lymphoma and died of complications from a transplant. Leigh was diagnosed with breast cancer a year after Scott died. She went through treatment, had a few months of "all clear," then it came roaring back. She fought for the next year and then died on January 5.

I was with her at her home when she died, along with her family, her dog Happy, and a gazillion friends. It's so weird in those circumstances, when people know what I do. They always say, "You must see this all the time," as though I have some sort of secret insight or password. I never know how to respond.

Yes, I know many people who have died. It is, for sure, an occupational hazard.

Yes, it is painful and raw. Every single time. Sometimes more than others.

No, I never get used to it.

I have thought a lot about dying and death ever since I was diagnosed myself. Leigh's brother gave me her copy of one of the books that I found strangely comforting 12 years ago during my own treatment--"The Tibetan Book of Living and Dying"--and I find that it is comforting once again as I reread it and mourn her loss.

I am drawn to the Buddhist vision of a cycle of life, death and rebirth, and of seeing the instant of death as a momentous opportunity to move towards enlightenment. I love the vision of us all as interconnected beings, all part of a vast source of energy, or spirit, or love--however you choose to describe it.

If I see it that way, then Leigh is not really gone. She's still a part of me and I am a part of her, as I am also a part of her friends and her family, even the ones I don't know--because we are all one and the same. Her death is not a moment of sadness, grief and loss, but becomes instead an opportunity and cause for happiness as the instant that she became pure energy and love, and freed herself of the pain of her physical being.

That doesn't mean that it doesn't hurt like hell when I realize, every morning on my way to work, that I can't pick up the phone and call her to check in and bounce Top Ten ideas off her. But I am trying to come to terms with the fact that that's just me feeling sorry for myself.

So how do you and I deal with this reality and go on? Maybe the best response I can give is from a conversation that I had with Leigh after Scott died. I don't even remember whether she had been diagnosed yet or not. She was lost and sad and questioning the point of going on, when someone like Scott---strong, positive, a fighter in every sense of the word--could lose the battle.

I remember that my answer came, through tears, without any thought or deliberation. It was something to this effect: "We go on because Scott would have given anything to be able to do so, and that choice was taken from him. We have that choice, so we choose to go on, and we honor him by living and loving and being joyful and appreciating every single second that we have on this planet. Because he can't."

Personally, I can't default to "everything happens for a reason." It feels like a cop-out to me. Nor can I go down the path of "It's what God wants." Unlike many people whose faith is strengthened in these circumstances, this cancer thing has made me abandon the idea of a personal God up there picking and choosing who gets sick and who doesn't; who lives and who dies. I think if I believed that, I would get so angry that it would probably destroy me. I have known way too many amazing, positive people who have died, and I have come to believe that their cancers weren't caused by anything but stinkin' bad luck and a bum roll of the genetic or environmental dice.

But that doesn't mean I think we are at the mercy of a totally random universe. We do hold a certain amount of control in our hands: the ability to research, to find the best treatments, to do everything we can--physically, mentally, spiritually and emotionally-- to maximize the impact of those treatments. But beyond that we have to realize that every single person brings their own individuality to the experience, right down to the cellular level, and that there is so much we DON'T know that it is really impossible to make comparisons. We all do the best we can, and that's all we can do. Period.

Every once in a while, when several deaths occur in succession, as they often do, I feel myself getting emotionally "thin.” When I’m at home, I have to just close the office and go home to play with my kids. When I was at Leigh’s house before she died, I started feeling like this, and I reached out to Dave Marsh, a writer and an incredible mentor of mine who lost his daughter Kristen to sarcoma and is really the whole reason I started Planet Cancer. Here is a portion of his response to me:

"But you carry on—I mean, you, personally, Heidi—for the same reason that I do, and Joanne does, and a lot of others, including the best of the doctors and nurses. At its simplest, we do it because we can and because there are so many more people we have known whose struggle didn’t work out or did for a while and then didn’t, and they need to be honored. ..."

...What I take from them [cancer patients] is much more immeasurable than what I give. They know the value of life, which is a much more interesting thing, to me, than anything at all about death. So, do me a favor, and thank Leigh as you once thanked me, for reminding you of what the intensity is like when you’re in the fight. Leigh has your love, and she gave love to Scott, love of a very high order. She’s a winner, not a loser, because if it just boils down to how long we breathe, then everybody’s a loser because nobody lives forever.”

Dave’s so right—there is a certain intensity of life when you're constantly faced with evidence of your own mortality, and only those who have come up against this same evidence can understand it. I would never have known Leigh or Scott or you if it weren't for being in this cancer world. The relationships form more quickly and go deeper faster, because we don't know how long we have, but we do know what's important. And as painful as it is to lose friends, I cannot imagine not having had them, or you, in my life. I have to back off from time to time, because I can't always live on that knife's edge of life and death, but I always return.

So take time to grieve your loss, and then take a few deep breaths, lift your head and rejoice in the knowledge that this amazing person was AND IS part of your very living being. I never knew Holly, but I bet that's what she would want you to do.

And now that I’ve written all this, I know Leigh is chiding me to do the same thing. Up there, shaking her finger at me and saying, “C’mon, precious one. Get a move on.”

This is Leigh. Isn't she beautiful?! She's probably thinking that she's glad her butt's not in the picture. She had a thing about her butt. (Photo courtesy of Allison V. Smith)

Funny (to us) book brainstorming session at Planet Cancer HQ

2008-01-01T16:12:00.000-08:00

So there we all were, lounging around Planet Cancer's Global Headquarters before the holiday break, tossing around ideas for the upcoming Planet Cancer book. (Unofficially--but affectionately--described as the first toilet book for young adults with cancer.)

Attendees (left to right):
Chad (standing), my twin brother, who was just dropping Chris off but totally got sucked in.
Chris, my brother the author, our fearless leader on this project.
Kyle, on loan from his parents in San Antonio for the day while he's home from Seattle
Courtney, PC's new development director, who had just unveiled the greatest gift of 2007: our very own cuddly white blood cells.
Kate, squeezing us in for a few hours before putting on her massage therapist hat.
Laura, taking a well-deserved break from setting up PC's new social network. (Coming soon!)

Here are just a few of the snippets of conversation. I believe they speak for themselves. (What they say, I'm not quite sure.)

"Is it C-A-N-A-B-I-S? C-A-N-A-B-B-I-S? Who knows how to spell 'marijuana?!' "

"Do tattoo ideas belong under spirituality?"

"Courtney, you have to go read the forum thread on masturbation. It's the funniest thing ever."

"Hmmm. Not sure we should call that section 'death.' I like 'end of life' better---speaks more to the circle of life, you know. Or how about 'Meeting up with former members of Planet Cancer?'"

"Hey, there are almost as many guys here as girls, for a change!" (from happy Kyle, who is used to being way outnumbered)

"We should talk about how to deal with the people who swarm you after diagnosis just so they'll have more gossip for their hairdressers. You know, the trauma queens."

(to Chad, bouncing in Heidi's office chair) "Must be this tall to ride in bouncy chairs, Chad." (Okay, so you had to be there for that one.)

In the dating discussion, someone brought up our friend Jim's suggested company tagline for PC: "Planet Cancer, the perfect dating solution for people with commitment issues." (Ouch)

Subtitles for the Nausea chapter. Or, as we started calling it, the Digest. (I know, I know)

"Second helpings."
"What goes down must come up."
"When what goes down comes up."
"Better the second time around."

Ewwww.

Much fun was had by all. Be afraid of this book! (But send us your submissions anyway!)

Training Future Doctors

2007-11-16T11:30:00.000-08:00

A couple of Mondays ago I found myself speeding across east Texas for the third year in a row, on my way to Texas A&M university to meet some first-year med students. Every year, the wonderful Dr. Chris Ruud and his colleagues from Scott & White Hospital invite us to bring a panel of young adult cancer survivors into their classroom.

The alleged reason is to teach these future docs about leukemia and lymphoma---we can only sneak in under the hematology curriculum module. But the subversive Planet Cancer reason is so the students can see what a real cancer survivor looks like, how we really think, and to plant the seeds for the development of empathy. The fact that a young, wanna-be doc can look at a real-live patient, listen to their story and think, "That could be me" is pretty powerful.

It's a brilliant idea, and everyone really enjoys it. I give my spiel on YAs and cancer, then we open the floor to the survivor panel, and the students ask whatever questions pop into their heads. This year was a great class with lots of questions---a bunch about communication, which I thought was interesting: "How did your doctor tell you it was cancer? What was the worst thing someone said to you? How much information did you want from your doctor?"

It's amazing to watch these young students start to comprehend the awesome task in front of them. One day soon they will be giving patients good and bad news, and helping them make life-changing decisions. It was heartening to see how eager they were to do the best job they could. Maybe, if we're lucky, we'll get some good oncologists out of it.

And I got a free burrito.

Hurry up and smell the roses

2007-10-05T12:11:00.000-07:00

Hmmmm. So many things to write about. So little time to write. When did it all get so fast? Some days I just want to slam on the brakes, and other days I have that cancer survivor symptom of feeling like I’m racing the clock—that time is short, so I’d better get a move on. It’s a weird sort of internal conflict. You know, “HURRY UP TO STOP AND SMELL THE ROSES BEFORE IT’S TOO LAAAAAATE! AAAAGH!!!!”

Maybe I just have a heightened awareness of time these days because of a major milestone I hit last week. I know I’m going to totally lose what little young adult street cred I still had, but I will confess to you right here that I am now…gulp…40 years old.

Wow.

So I have been enduring all of the standard phone calls and emails and cards full of smart-ass cracks about dentures and Depends and being over the hill (I also was turned onto the best e-card site EVER: www.someecards.com , with the genius tagline of "When you care enough to hit send"). And I think it’s kind of funny that the generally accepted principle is that everyone hates turning 40 and that it’s terrible and most people just want to ignore, deny or lie about it.

Me? I love birthdays. The more the better, and you better believe that a celebration is ALWAYS in order. My parents and our younger brother threw a huge party for me and my twin brother Chad. Lots of friends and family from near and far descended upon Austin--it was better than a wedding, and without the performance anxiety. :-)

A little background on Chad: he is also a recent cancer survivor, as are my mother and father. (That’s a whole ‘nother story, but suffice it say that I refer to my family as the “genetic cesspool”). He is also a non-drinker because of some liver damage he sustained in the past. So he was in to see his liver doctor the week before, and informed (threatened?) him that we were turning 40 and that he planned to have a few cocktails to celebrate.

His doctor replied, “I think you should. After all, you two haven’t had the easiest time getting there!”

So here’s to just getting there. And to celebrating it! Now hurry up and go smell some roses.

The In-Between Moments at CURE's Patient & Survivor Forum

2007-09-18T13:16:00.000-07:00

Last weekend I was at the CURE Patient and Survivor Forum in Chicago. For the first time, they added a “Young Adult Track,” which I had the pleasure of developing with Allan Goldberg, the E.D. of First Descents kayaking camp. That, in and of itself, is momentous and exciting and fabulous. But the best parts of the weekend for me were the unscripted, unplanned-for moments. For example…

Not officially on the YA track—but we claimed her anyway!—Kris Carr was there to screen her documentary, Crazy Sexy Cancer. So Saturday afternoon, Allan, Kris and I sneaked out of the conference with Susan McClure (YA survivor, PC board member, kick-ass publisher of CURE and HEAL mags) and Dan Shapiro (YA survivor, psychiatrist, and author of Mom’s Marijuana) to get some lunch outside of the hotel. We traversed a flea-market parking lot and risked our lives crossing a major road, all in an effort to find an alternative to sports bar food. (I mean, once you’ve seen Crazy Sexy Cancer, you aren’t going to sit down with Kris and chow down on beef nachos and fried cheese. You just aren’t.) But the food was secondary because…oh my god…. these four people are about the funniest, most honest AND most inappropriate folks I have ever met.

I think Kris was stunned at first—she’s been rolling on the integrative medicine circuit and is used to peace, light and love. (Not to say we don’t HAVE peace, light and love but, being pragmatic, we cancer folks also like to include some variant of nausea, scars and constipation.) But in no time, she was matching all of us for war stories: for example, one newspaper wrote an article about her under the bright, chipper headline: “Terrific…And Terminal!” She got sympathy for about...oh, two seconds before we started roaring with laughter. Because, of course, it's hilarious when a not-so-gifted headline writer predicts your imminent demise to your entire hometown, right?

The other unplanned thing was the afternoon sessions, which started with Debra Thaler-Demers’ talk on Psychosocial Issues and magically morphed into a spontaneous YA support group. A roomful of young adults, most of whom had never met before, encouraging each other, sharing woes from the trenches, laughing our asses off, and even laying a little “tough love” on the line. (We might love each other, but no one gets away with swiping the cancer card in this crowd!)

I’m constantly amazed at how quickly and deeply we can connect with other YA cancer survivors, given the opportunity. How we “get” each other without having to slog through the back story. And always, always, how we manage to pull laughter (inappropriate or not!) out of the darkest places. I am in awe of how much power that gives us as a community, whether it’s four people or forty.

Pretty damn cool.

Welcome to the...current decade?

2007-09-01T13:21:00.000-07:00

Ta-daaaah! We finally made it into the current decade. Welcome to the Planet Cancer blog.

This blog serves many purposes. It’s another way for us to convey what’s happening on the Planet. It’s an avenue to rally the young adult community for causes near and dear to our hearts and our health.

For the most part, though, this is a space for the dark, twisted souls at Planet Cancer HQ to share tidbits, thoughts and opinions on the completely random stuff that crosses our cancer radar. People who inspire us (or piss us off). National trends in cancer treatment for young adults. The rampant “cyberchondria” that plagues our office, and how we deal with it. And, of course, it wouldn’t be Planet Cancer without a healthy dose of ridiculous things that we think are funny.

Most of the time, I’ll be the one sounding off in this space, but we’ll also have guest bloggers from time to time—people who have something to say and just need a space to say it. Hopefully, you’ll get to know all of us a little better: me, Laura, Kate, Kyle and the rest of you who make Planet Cancer what it is.

After all, this is our community and it’s only as good as you guys are willing to make it. So post your comments, submit your own musings and put yourself out there if you’ve got something to say.

Here we go together--into the blogosphere. Enjoy!