Thursday, February 18, 2010

My life as a lurker

When you give birth, you want to know all the details from other women who have been through it. No bit of minutiae is too minuscule or too intimate. When did your labor start? How did you know? Did you have a bloody show? Did your water break beforehand? How far apart were your contractions when you went to the hospital or called the midwife? How long before you went into transition? Did you take drugs? Have an epiosotomy? What position were you in? How much did the baby weigh? How long before it started to nurse? When did your milk come in? When was your baby's first stool?

It's the same with breast cancer: How big was your tumor? What quadrant was it in? How did you find it? What grade? Was it in the lobules or the ducts? Were your lymph nodes clear? Was it hormone sensitive or her2 positive? Did you have a lumpectomy or a mastectomy? Uni or bilateral? Reconstruction? Implant or transplant? Did you get a port? Did you get lymphedema? What was your chemo regimen? Your radiation protocol? Where were you treated? Who's your surgeon, your medical oncologist, your radiation oncologist? What's your follow-up schedule? Do you get scanned or have tumor markers drawn? Do you get ultrasounds or MRIs or just mammograms?

Essentially, this is meaningless information, since no other woman's disease is precisely the same as yours. But somehow it's comforting to compare notes. Part of it is finding your place in life's pecking order by seeing where you fall in the risk-of-recurrence ranks. Part of it is getting to know your tribe, finding out who you are now by finding out who the other people in your cohort are. Part of it is the comfort of knowing you're not alone.

It may seem as if every woman in the world has breast cancer these days, but in fact it's actually hard to find someone with it when you're looking. Ironically, oncologists' waiting rooms, where the cancer-ridden congregate, are not very good venues for starting up conversations. So, much of this checking-out happens online, particularly via blogs.

What did women do before the Web? My first stop on the cancer-info highway was, which is not really a blog but an online forum. But whoever put it together completely understood what she was doing. When you create your profile to participate in the discussions, you spell out all the key data (date of diagnosis; tumor type, size and grade; nodal status; hormone/her2 status), and it appears with your signature. My screen name is nagem, and my stats are "Diagnosis: 9/23/2005, ILC, 1cm, Stage IIa, Grade 3, 1/13 nodes, ER-/PR-, HER2+." To an outsider, these details would be boring, perhaps incomprehensible, but to the inmates of this weird world, they tell a story. And they help provide a context for yours. Post any question, and someone will answer from her own experience.

Now I have many, many stops on that long, long highway, too many to enumerate, and I visit many of them daily: The Assertive Cancer Patient, Killer Boob, I Blame the Patriarchy, Rock the Bald, my Breast Cancer blog, to name a few. I lurk. I comment. These are my invisible friends (some don't even know I'm their friend!). As my diagnosis recedes into the past (fingers crossed, knock on wood), I try to extricate myself from my cancer-patient identity, but I'm reluctant to leave these fellow travelers behind. Wittingly and not, they've been kind to me, and I want to know how their stories turn out. So for a few minutes every day, I check in with each and find out how they all are.

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