Wednesday, November 12, 2008

Mistake

Today I "bumped into" an online calculator for life expectancy for breast cancer patients.

I plugged in my data.

It made me, literally, feel sick. The data went out 15 years, and it wasn't pretty. Not pretty at all.

Ugly, actually. Very, very ugly.

I am fighting back the tears and remembering that I am not a statistic. And I'm remembering that it didn't account for Herceptin, or my radiation, or my prophylactic mastectomy and oopharectomy.

I'm trying not to remember my multi-focal disease....four tumors in all (three of IDC: 2.1, 1.5, and .2 cm; one DCIS tumor of 10cm).

I'm trying to remember that my positive node was "barely" positive.

I'm trying to remember that new treatments come out all the time. I haven't even started the Zometa yet because I haven't been able to bring myself to do it.

I need ot work on the Hunts Point Book now. This is so very depressing that it weighs on me like a bus would. Hard to breathe.

5 comments:

Bonnie G said...

Hi Kristina! I just happened about your blog. I'm sorry you had to read that report on breast cancer survival. I try to avoid that stuff as much as possible. I had a double mastectomy about 20 months ago (skin sparing) and I've never been able to face reconstruction. Can you share your experience with me? Because Welk was my recommended surgeon and...well...ahem...is it worth it? I hate the way I look, but I'm not in pain (finally), and I've already nixed the idea of having my my lat muscles removed. Can you share with me your experience? I can't wear the strap on breasts--yuck.I'd have to go with the saline implants which worry me all on their own. I'd really appreciate your perspective. Thanks.

Kristina said...

Bonnie,
I have heard that Welk's work is some of the best in the business. His bedside manner completely turned me off...but perhaps I should have gone with him, as my first surgeon made some mistakes. I am now with Isik (shares and office with Welk) and am pleased with him so far.

For me, it was absolutely critical that I do reconstruction; it's a part of my emotional healing process. However, quite a bit has gone wrong for me.

If you want to see pictures of my reconstruction, go to www.youngsurvival.org and choose 'community' then 'bulletin board' and then 'reconstruction' - mine is not the only one up, but you can view mine. I'm not done yet - I have a minimum of one more surgery. Pictures tell a thousand words.

The lat was my only option due to my treatment and size (small). Despite my problems, I am glad I chose reconstruction.

Anonymous said...

Why on earth would you do a calculator like that?! Life expectancy several south African countries is only in the early 40s. Life expectancy if you have cystic fibrosis in the mid-30s. Do you see? They don't apply to you. Statistics don't apply to an individual. Quit surfing stuff like that! Sorry to be blunt, love the blog, hate to see you corrupt your emotional healing by considering something like this. I'm pulling for you.

Kristina said...

Hey anonymous.

This calculator wasn't about cystic fibrosis, this calculator wasn't about other people, it was about people like me. I like to be informed, and I use that information to spur me forward.

Trouble signing up for Zometa, because it involves going to the chemo ward for the infusion. Trouble getting dental work done because I can't do medical stuff without dwelling.

So sometimes I have to remind myself that this is real, that I have to continue doing nasty stuff to stay alive, that it's worth it to go back to the chemo ward.

Lately I'm struggling so much with my reconstruction, and I've been filled with self doubt about my choices. This is a reminder of why I have to keep being hard core.

I defend my need to look at the data, even while declaring it a mistake.

I know it's not case specific, even when it's asking for tumor and treatment specifics. I know I'm an individual, not a statistic.

But I also know that this disease is trying to kill me. And that with my tumor statistics and no treatment, the estimate was that I would have lived only a year or two - I'd most likely be dead now. Damn. And with treatment? Not out of the woods yet.

This emotional healing is complicated, messy business. I don't always know which end is up... so I'm just muddling through.

Thank you for pulling for me. I need that.

Caley said...

Does that calculator factor in prayer? God's goodness and ability to heal? I'm thinking of you and praying for you today. I love you.