Meet my Cyberchondriac Girls!

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or she was picketing the local branch of CPL because they keep billing her $2.37 on an insurance policy that's been out of date for six years).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.

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)