Navel gazing....

This is a really tough entry to write, I've been thinking about it for a long time, but it came back up again today.

I'm a fairly active participant on a Yahoo bulletin board for PMP patients and/or caregivers. It's called the PMP Belly Button Club, in reference to the fact that many people end up losing their belly buttons as part of the big surgery.

(An aside--native Americans in the Southwest, I don't recall exactly which tribe, could tell ghosts apart from humans by looking for belly buttons. If there was no belly button, it was a ghost. I managed to keep my belly button, although the scar as it is healing kind of intrudes on it, partially concealing my original navel, but in a way right now making me look like I have two belly buttons. So what the hell does that say about me?)

Back to the website--it has been incredible, a godsend. The amount of information, support, laughs, and friendship I have received from those people is amazing. But you get a heck of a lot of perspective, too.

Someone will post a message that their two or three year anniversary CT scan was clear, and that all looks good. Other members will reply with congratulations and levity. Then, a few posts later, you'll see the dreaded "another angel among us" subject line or another re: line that makes your stomach drop, and that means a member has died. Sometimes another member will have noticed that someone hasn't posted in a few months, they do some research and make some calls, and find out about the death. Or the caregiver of the patient will post with the sad news.

Today was another one--a gentleman named Bob, who is married to a member named Lynda, passed away earlier today. We all knew it was coming, for the past week or so. I didn't know them but through the website, but they were a mainstay of the PMP online community. Of course, Lynda still is, her advice has helped countless people. So selfless.

It's so damn frustrating, and makes me so angry. No matter the age, it's just not fair. And selfishly, it's frightening, too, as many of these people are my age with the same diagnosis--and suddenly, or not so suddenly, they take a turn for the worse.

They are all sad, but one that hit me particularly hard was the death of a member named Jean Gasbarro. She died on December 4, 2009. 39 years old. She fought PMP for something like 7 years, with multiple surgeries. I never interacted with her, but found her blog referenced on the Yahoo site; it is the digital footprint or echo of a now-dead person. Heartbreaking. She wrote for years about about her travels, her husband, decorating her new home, Christmas, and yes, her cancer. They are the words of someone who was Alive, written in such an active and passionate voice, so funny and literate, scared and hopeful, and now she is dead. It just makes me sad and pisses me off at the same time.