Childhood cancer, ‘Shake it off’

By Bill Colvard -

On April 25, 2017, I breathed in the smell of Tatyana’s hair for the last time. She died early that morning after battling brain cancer for three-and-a-half of her five years. She was a scrappy little fighter, that granddaughter of mine, living more than a year longer than her doctors said she would live when they gave up on her a year-and-a-half previously.

Even at the very end after the machines had been disconnected, she breathed a few more times; long, loud, screeching, painful breaths, but yet, she hung on. Had fate dealt her a different hand, it’s hard to say what she might have achieved with such tenacity.

Long before she fell ill, I had read that smell is the oldest of our sense memories and is buried way down in the deepest part of our lizard brain, so smell memories last longer than any others. I believe this to be true because the smell of chrysanthemum foliage takes me instantly back to my grandparent’s vegetable garden where I played while they worked back when I was only 2 or 3.

So after Tat was diagnosed with brain cancer, I wanted to make sure I never forgot her no matter how cloudy my brain may get in the coming years so I began taking long, deep inhales every time I hugged her. Whenever a little kid sits on your lap, their little noggin is right there under your nose anyway. I just made a conscious effort to do a deep yoga breath and make a memory of the sensation so the smell of coconut oil hair product and baby sweat are firmly embedded in the very furthest reaches of my lizard brain.

Which is right where I want them, because no matter how much brain function I may lose as I age, I don’t want to lose the memory of Tati. It’s the only real thing that’s left of her. Calling up that smell memory to my conscious brain has the power to make me cry. And I suspect it always will. And I wouldn’t have it any other way.

At the time of Tati’s death, I received a lot of well wishes and condolences. I know that some people feel inadequate if all they can manage in the face of grief is a generic “sorry for your loss.” I often feel that way myself when it’s all I’ve got to give but you shouldn’t. It’s so trite as to be meaningless, but it does show the good intentions of the person saying it and I was grateful every time somebody said it.

But the folks who counseled me that “time heals all wounds” or “it will get better with time” or some other nonsense like “she’s in a better place,” their sanctimonious know-it-allness annoyed the crap out of me and I had to try really hard to remember that they were attempting to be kind and comforting, even as they were failing miserably to do so.

My friend Lois finally hit the nail on the head when she said that the pain would never go away and it would never get any better but that it would become my new normal. And when that happened I’d be able to function and move on with whatever I needed to do. And she was right. That’s exactly what has happened. The pain doesn’t get any less. You just get used to it.

We all need that one friend who is not afraid to tell us the truth.

I’m going into all this now because September is Childhood Cancer Awareness Month and although, to be perfectly honest, I’d rather be a little bit less aware of it, I wasn’t given that choice. And you may not be, either. Every day 43 children are diagnosed with cancer. And though survival rates have improved dramatically in the past 50 years, the number of children who are diagnosed with cancer each year has not declined in almost 20 years. And the problems that survivors of childhood cancer face is a little-known but heartbreaking fact.

And don’t even get me started on the lack of funding for childhood cancer research. It’s infuriating. There are some intriguing developments on the horizon. Just this week, I heard that zika virus may be useful in treating children’s brain cancer. So, maybe some future kid won’t have to die like Tatyana did.

So think about the kids with cancer in September. Wear a gold ribbon. Write a check. (I like St. Baldrick’s Foundation). Organize a fundraiser. Donate your wedding gown.

Yep, you read that right. You can donate a wedding gown to be recycled into a burial gown for a little one who died of cancer. Angel gowns, they’re sometimes called. I used to think this was the most macabre, slightly creepy thing I’d ever heard of. But now I think it’s kind of sweet.

After Tat died, I found out that some gowns have already been donated to Brenner’s Children’s Hospital where Tat received her treatments and they don’t have anyone to transform them for their next use.

That’s probably where I’m going as far as doing my part for the cause. It’s in my skill set and some of the angel gowns I’ve seen are kind of ugly and amateurish. Full of love, but woefully lacking polish. Which is a shame. And it’s a skill I possess, like it or not.

I’m just not sure it wouldn’t make me so sad I’d want to slit my wrists in the bathtub and be done with it instead of drinking myself to death slowly as was the original plan. (Don’t worry. I’m past that now. At long last, I’m good with my new normal.)

Hopefully, if the sadness came on me again, I’d remember Tatyana’s favorite song as I have done many times before. “Players gonna play, play, play, play, play and haters gonna hate, hare, hate, hate, hate but I’m gonna just shake, shake shake, shake, shake it off. — Shake it off.”

There’s probably a reason “Shake it Off” was Tat’s favorite song. Those words of the great American poet Taylor Swift are words she lived by. Shake it off was something she did every day of her short life.

And every day, I try to learn from her example.

By Bill Colvard

Reach Bill Colvard at 336-415-4699.

Reach Bill Colvard at 336-415-4699.

comments powered by Disqus