The cover story in Newsweek this week is Jonathan Alter's My Life with Cancer. It is very, very good and he has a particularly good turn of phrase, describing what it is like to be, or love, a cancer survivor. And as soon as you get the diagnosis -- you are a survivor. You begin surviving at that moment.
One such excerpt:
"Many will never achieve remission at all, while the lucky ones like me get to live with a sword of Damocles hanging over our heads. A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."
He has another good piece, only available online -- Just Not, Lest Ye Be Judged -- in which he tells those who criticize the Edwardses that until you're in the situation, you don't know how you'll react.
I will admit to being a bit frustrated that with all the articles about being a cancer survivor, online and in the print edition, none touch on childhood cancer. This seems a bit preposterous to me -- after all, these are the people who will (hopefully) live as survivors the longest. These are the people, like Little Warrior, who will have no memory of an identity that doesn't include being a cancer survivor.
When this first began, I remember saying, "This will not define me. It will not define her."
I stand by that, but I have also come to realize that it is now a part of both of our identities. And there's no way I can keep that from happening. If all goes well, until she's 6 years old, LW will be going for scans to see if the cancer has returned. What, I can do a Roberto Benigni and tell her that it's all a game? "Today, darling, we're going to Magic Tunnel Land! You get to go on a supercool ride called an MRI. You have to lie very still and if you do, you win a tank!"
So, The Husband and I will do the best we can. We won't tell her that she survived because "God has plans for her," -- that denigrates the children who don't make it. But we will explain that this is something that happened when she was just a little baby. And we will talk about all the people who sent cards, and prayers, and teddy bears. And every year, she will take her lap in the Relay for Life.
Please.
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1 comment:
For me, our genetic diagnosis consumed me and my life. I think I even become the diagnosis for a time until the natural process of grieving and healing worked with time. I'm now at the point where it has become a part of my identity every second of every day, BUT it's not everything anymore. THANK GOD. One day at a time as a survivor.
I don't see much on pediatric survivors of cancer. Maybe it makes people uncomfortable -- the truth tends to do that sometimes. Ah, to have the luxury of being in denial again.
I love following your story! Have a wonderful weekend.
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