Eric's entry posed the question that I often asked myself when working on my blog, Jillabuster. Just how much do people really want to know about "My Cancer"? When I was diagnosed with a particularly lethal form of breast cancer in Sept. 2004, I thought my blog and web site would be good resources to send my friends and family to for information and updates during my treatment. But I found myself hesitating to write about the bad stuff. No one wants to read about that, I thought. Why depress people? So my posts were few and far between and probably did not do much to inform folks about how I was doing.
My blog and website became a repository for my other interests: Springsteen, politics, FSU Football and recipes. One thing I discovered was that I really didn't like being defined as, "the one with the bad cancer."
But boy, am I interested in reading other cancer warriors' accounts.
Leroy Siever's My Cancer series and blog drew me in from the minute I heard about it and the former executive producer of ABC's Nightline (back when it was Koppelicious) did not disappoint. One statement in particular jumped out at me:
"For those of us directly affected, cancer opens up a whole new world. I like to call it a parallel universe. It looks like the regular world, but it's very, very different. It's populated by other patients with whom you share war stories. 'What drugs are you on?' 'How are your side effects?'"
That parallel universe was mine! Although my family, friends and co workers were incredibly supportive during my 12 months of treatment, there really was a world where in some ways I felt more at home. At Gulfcoast Oncologists, I could walk into the chemo room and actually breath a sign of relief. No need to fake it here. Morbid jokes? No problem! Feel like pulling the wig off? Go right ahead. No one here gives a second look at bald (or breastless) women. When fellow Times employee, metro editor Barry Bradley wrote a series about his final days living with lung cancer, he spoke of the chemo infusion room like it was a quiet, sad place:
"People don't chat much in the infusion room. There's the woman alone with her John Grisham book, the man who is taking a nap, a woman doing some kind of knitting. We all know why we're there and we have little reason to discuss it."
My colleagues at the Times, Gretchen Letterman and Jill Deisler, both had been with me to chemo at the same place where Barry received his treatment. We all marveled at the different take Barry had on place I viewed as a combination coffeehouse, therapy session and sanctuary. Barry and I were in treatment at the same time, and met because of this. We would stop and chat about our treatments when ever we saw each other for the next few months and I got to know him a bit through that lens. Although his thoughts on Gulfcoast's chemo room were nothing like mine, we were in agreement about the expertise and kindness of the staff there. His "war stories" as Siever calls them, were profoundly different from my own but his experiences gave me great insight into this universe I now inhabited.
Which is why the following comment from a reader of Eric Deggans's blog struck me cold when I read it this morning:
i suppose some people can gain insights from these kinds of maudlin reports. however, i find them more than a bit self indulgent. millions of poor people get fatal diagnoses every day, but they don't have access to media where they can publicly engage in personal therapy to help them get through.
then when these poor reporters inevitably die after leaving behind their final dramatic thoughts, they are, well, always simply forgotten.
harsh? yes. but am i wrong?
uh, yeah.
When Barry wrote about his struggle with lung cancer, the comments poured in and they were not just from those of us living in the parallel universe. They came from our caretakers, our co-workers, our bosses, our neighbors, our friends, our families, our lovers. Believe me, they want to know what is going on in a cancer patient's head. Because most of us aren't telling the whole story. And they know it.
And "Self-indulgent"? Lord help us.
This must be the same guy who thinks I'm lucky because I get to use handicapped parking now.
That's right, buddy, I endured a year filled with rounds of dense dose chemo, chemically-induced "freight train" menopause, image-altering surgery and hair loss, more cancer found, more chemo, and finally, the creme-de-la-creme of treatments, daily radiation/chemo combos for weeks on end -- AS A SCHEME TO GET A BETTER PARKING SPACE??!?!?
Apparently, this guy lives in the same parallel universe as a security guard at work who stopped me one morning on my way into the Times building. I needed to pick up some materials for a workshop I was presenting later that morning. Because I was running late and already exhausted just from getting ready for the day, I pulled into the handicapped parking space in our visitor's lot. Any steps I could save would help me get through what was sure to be a challenging day.
Anyway, the guard stops me as I am passing through security and asks, "Ma'am, what kind of handicap do you have?"
Dumbfounded, I found myself stammering a reply, "Breast cancer, . . . late stage," (as if that would make me more worthy of a handicapped space).
But he didn't stop there. I guess I had done a good job with my wig and makeup (usually the no eyelashes/no eyebrows gave me away) because he then asked me if I had a handicapped sticker on my car.
"Of course," I replied, and started to move toward the elevators.
But the handicapped parking vigilante was hardly finished with me. "Well ma'am, we have to be careful that people who aren't handicapped don't use those spaces, and you just didn't look too handicapped coming in from the lot."
If he only knew the mental pep rally I gave myself every time I stepped out in public. ("Be energetic! Smile! Don't feel sorry for yourself!") Do you think he might be well served to read about a cancer patient's experiences? Even if it happened to be a member of the main-stream-media? Apparently, working at a major media outlet doesn't give you a free pass-- even into your own building! (NOTE: This one person does not in any way reflect the service of the rest of the fantastic professional security team where I work. They were some of the most supportive and caring members of the Times family upon my return to work).
So, speaking as one of the "millions of poor people (who) get fatal diagnoses every day, but don't have access to media where they can publicly engage in personal therapy to help them get through. . ." that "formerly mr anonymous" refers to in his post to Deggan's blog, I say,
You don't speak for us. You don't speak for the legions of friends and family who are going through our cancer journey with us. And since you don't have the nerve to sign your real name, "formerly mr anonymous," you don't even count as one person to me. So lay off all us cancer patients, buddy. Go find a puppy to kick.
