Y’all know the Mark Twain quote about lies, damn lies and statistics. I had another reminder recently about how easy it is to let numbers terrify you when a friend needed some help after reading a scary report.
One of the techniques I’ve found most helpful is to seize on any shred of positivity you can find in the data. I’ll often flip the numbers if it seems more positive (e.g., 49% chance of dying? Try 51% chance of LIVING!). But I hit the jackpot recently with finding new data that don’t need any spinning to make me feel better!
This site has some lovely, lovely words of comfort for me. Basically, they said that because technology is getting so much better at identifying when melanoma has spread to lymph nodes and can ID metastases so much smaller than before, a lot of the older survival rates just don’t apply. That is, the survival rates we see are based on older technology from people who had bigger/more metastases, so people with smaller ones were classified as Stage II under the old way.
This is GREAT news for me because I only had one positive lymph node and it was a micrometastasis. That is, I very likely would have been Stage II in an earlier time (also meaning that in an earlier time, they might not have been as aggressive and might have missed something that they hopefully got out in my second surgery).
I also looked up the new AJCC staging for melanoma (knowing full well that reading the ACTUAL data could screw up my lovely new hope based on the nice vague generalities of the article, always a danger when you read the literature).
Happily (HAPPILY!!!), it did not! In fact, it made it even better!
Pretty much a miracle.
In the old staging and with the old charts, my odds for 20 year survival were roughly 40%. Not super awesome, but still better than many of my fellow cancer warriors, so I really don’t want to complain too much. With the new staging, based on two different criteria, my odds are somewhere between 50% and 60% for 20 year survival. So great!!! The crazy thing is, if my stupid melanoma hadn’t ulcerated in the time between making the appointment with the derm and actually seeing him (less than a week), my odds in one category would be almost 80%. Nuts. So silly to think that I actually thought that was a GOOD sign at the time, that it was peeling away or something.
So anyway, even though it’s just a 10% change or so in numbers, psychologically it means a whole lot more. I hope that as the years go by, these numbers just get better and better!
As you may or may not know, signs and symbols often mean a lot to me. Not in a crazy superstitious way, but in a way that I strive to use to make meaning of my life.
Yesterday, I had two really strong signs.
First, (and this will seem silly to 99% of you), a very special diaper came up for sale. In August, 2011, I was just about to finish my treatment and celebrate my 30th birthday. I had been admiring this diaper company, Twinkie Tush, for their pretty prints as a way to escape from the pain of the IVs and the body aches, chills and fatigue from the interferon. The week after I finished my interferon, this gorgeous, amazing diaper showed up and spoke to me. These diapers are crazy hard to get, so I wasn’t able to get it then, but I never stopped thinking about it. Whenever I saw a picture of it, it reminded me of the hope and happiness I felt having finished the interferon and being able to go live my life with my new little family.
About a year later, someone sold me one of those diapers, in used condition, but I was happy to have it in any shape. They only make a very small number of each print of diaper, so a new one was not even possible to get at that point. Fast forward to yesterday. Twinkie Tush previewed the diapers going on sale tonight, the first time on their new site. In honor of launching the long-awaited site, they were stalking MY BELOVED DIAPER! (Called “When in Rome”). This was the first time in a year and a half this fabric has been seen anywhere, and these will be brand new, just as I first admired them almost 18 months ago. I will be trying to get one, but they are still hard to get, so we shall see!
THEN. Last night, Peter was giving Emmie her bath, as I was halfway listening to something on Pandora. Something about the song on was niggling at me and I kind of tried to place it. Belly dance? Couldn’t conjure the choreography. Rock Band? Nope. Then the chorus launched and I almost lost it.
I started dancing around like a maniac, brought the iPod into the bathroom where Emmie started jamming in the tub and Peter had a huge smile on his face.
This was the song that I listened to with tears running down my face after I learned the cancer had not spread beyond one lymph node. This was the song that carried me through the interferon. This was the video I watched with Grandma Emmie watching behind me, probably befuddled by what it all meant, but knowing that it meant a great deal to me (and also, almost without a doubt, the last music video she ever watched).
This song meant so much to me, and yet somehow I hadn’t heard it in more than a year. I don’t listen to radio much anymore, and caring for Emmie had taken up all that extra time. I was lucky enough to be able to sort of forget about cancer, and therefore not need songs like this to carry me through, since simply living life was powerful enough.
What does this all mean? I don’t know, but I’m taking them as good signs.