Thursday, March 4, 2010

Paper Cuts

I was sent an email from the mother of a bilateral Wilms patient who was able to put into words the things that I could least not in a coherent way. Enjoy.

"Paper cuts still hurt."

That's what I said to a parent whose child didn't have cancer. She was telling me about a problem her child was having that was serious but not potentially fatal. She apologized and gave me what we've all heard before, the "How can I complain about my child when yours has cancer?" thing.

The way I explained it to her is, hey, even for me after diagnosis, if I got a paper cut, it still hurt. Sure, it was put into perspective, but that didn't mean I didn't curse and put my finger in my mouth and whine when I then got hand sanitizer on it.

I responded with how much I loved what she wrote. And how people always walking on eggshells around you can make it feel like there's a death cloud hanging over your head. SageSuperMom responds:

Thank you! Yes, the eggshells...that's still the one I'm dealing with. When people really want to talk to me about it, I try to make them understand how very "ordinary" cancer becomes. (Horrible, yes, but ordinary.) It's driving to chemo and remembering money to pay for parking and your child dropping hair in their spaghetti and saying funny things like, "I'm not sick! I just have cancer!"

I don't blame them for not getting it. I've been in cancer world for 4 years, and I still have the moments where I'm watching a St. Jude's commercial and feeling those things I felt pre-cancer. "Oh, those poor kids," and then having the (excuse my language) "Holy S---, my child has CANCER!" Because there's Cancer with a capital C, the thing you know before diagnosis, and then there's cancer with a little c-- that scary, annoying, and very real thing it becomes afer diagnosis.

And I think there's a vast chasm between the person who feels they shouldn't experience any pain in light of your circumstance and the person who is so completely self-focused, they don't even realize how ridiculous they sound. The "Oh, you're so lucky, you get to go on a Make-A-Wish trip" kind of person.

Nobody really WANTS to go on a Make-A-Wish trip.

Anyway, go ahead, you can complain to me about your problems. Don't feel guilty. I know canker sores still hurt.

Yet another person is shaving his head for St. Baldrick's this weekend! We are amazed by the strangers who are doing this in honor of Eve. Check out Michael's page here.

We had a great time at St. Baldrick's and encourage you to stop by one of their events if you have a chance. I promise, you [probably] won't find any hair in your beer.


  1. well put. see you sat for meal-inna-glass and big heart people. cuck fancer!

  2. What's interesting is, I spoke with a parent, also a nurse, whose daughter is several years off-treatment for Wilms, and she chose to see the perspective that we get as a gift. Odd sort of gift, but life is funny sometimes.

    As an example, this mom took her son to the hospital with a broken leg not long after her daughter finished treatment, and the doctor remarked that she was the calmest parent he'd seen in there. She responded by saying that while a broken leg is unfortunate, it's not cancer and generally doesn't have the same sorts of consequences.

    It has two sides--on one side, people don't want to complain to us about little issues because they feel bad. On the other side, they are acutely aware of the perspective that they had and perhaps don't want us to tell them (not that we would) that their problem is no big deal.

    Hmm..I think I wrote more than you, and it's your blog. I'm done now.

  3. I understand and appreciate the new perspective. I just don't want anyone to be afraid to tell me what's bothering them- I don't want anyone to think I consider their problems "insignificant." But I do have a new perspective. Dan's adenoids need to come out, but I'm kind of like "whatev!" with those. I'll squeeze that little procedure into our schedule when I can find the time! No biggie.