I write things in my head before I actually write them. I had recently written in my head an update on Brad and his cancer journey and I was ready to put pen to paper. I was going to write, “Brad is now cancer free,” and say that I was nervous to type those words because I am a bit superstitious.
Lo and behold we went to his regular appointment last week and they found something they weren’t so happy about seeing in his sinus. So much for my “all clear” post on Stylebook.
After a grindingly slow weekend that felt like déjà vu, his biopsy came back benign, he had two great clean scans, and we can now say we have lived through what I will call our first “scare” – and also knocked out our first monitoring milestone. Clean scans are the currency of cancer survivors and Brad needs 15 more clean sets to feel good about his long-haul prognosis.
I would be inaccurate to say I found it funny that my “all clear” post was overrun by a complication – perhaps ironic is the better word. But the post I planned in my head was about learning to live with both gratitude and fear.
I count my blessings every day. I have written many times that I fell in the honey pot of life long ago. I have been given so much, and I am acutely aware of this. I am grateful for the divine providence that enabled us to find Brad’s tumor early before its tentacles reached what he likes to call his “big beautiful brain.” I am grateful for the care that he received and I am obsessed with Johns Hopkins Hospital and our surgeon, and the emotional investment he has in Brad’s survival. I am grateful that we have good insurance that allows us to receive this world-class medical care. I am grateful for the prayers and outpouring of concern that we have received from so many people. I am grateful for our amazing friends, family, and community. I wanted to write a post to update everyone on Brad because of all this amazing support.
Cancer patients are loathe to pronounce themselves “cancer free,” and with good reason – once you know that a part of your own body is trying to kill you, you can’t get away from that knowledge and you don’t have the hubris to say, with certainty, that it’s gone. We are ever-vigilant looking for the recurrence that every cancer family fears; we go to Johns Hopkins every four weeks so that Brad can have a camera stuck all the way up his nose to the edge of his brain (I watch it on the monitor and I now know way more about his skull’s interior than I’d like.) Every three months he gets a half day’s worth of scans – and compensatory doses of valium to get through them. Because only 2,000 Americans per year get sinus cancer, the data on which we’d rely for comforting odds is thin, and observation is our only backstop.
So now we get to the fear part of this story. It turns out I learned all I needed to know about cancer when I was 17 with my mom. It’s just one truth: a diagnosis will forever change you. It doesn’t matter if the cancer you get is the “good” kind or the “bad” kind. If the cancer you encounter is the kind you can live with or the kind that everyone knows without asking has a terminal prognosis, the truism still holds. Whether it’s the kind they take out and you don’t worry much more or the kind they take out and then follow with chemo or radiation that seems worse than the disease, any cancer diagnosis changes you. No matter how successful your treatment, you will forever live in fear of the comeback. Brad graphically describes it as a guillotine that’s always just beyond the fuzzy edge of his peripheral vision.
A close friend further down this road than I am told me that every scan gets a little easier and enables one to think about cancer less each day, even if the fear never goes away. I assume when we make it past year five – the outpost of our monitoring plan – we will still worry.
I’m anxious by nature and I’m willing to confess I already spent many nights before this crisis worrying about some disease I didn’t have. Or some accident my children never had. I now add up all the time I spent worrying about nothing and kick myself. In 2008, I actually used to sleep on the floor next to Blair’s crib because I had convinced myself someone was actually going to climb through the second-story window and steal her! You can’t make up this kind of crazy!
Now my anxiety is more acute and more grounded. I liken it to poor Pigpen in the Charlie Brown/Peanuts cartoon strip. Remember him? He always walks with a cloud of dirt around him. That dirt is how I feel about cancer. The next five years it will just always be with me – and I am not even the one who had the tumor. But everyone who’s confronted this awful disease knows the diagnosis doesn’t just happen to one person; it happens to your family and all the people who love you.
Watching Brad live with his constant fear is the worst. Will he see his kids graduate? Will he walk his daughter down the aisle? Will he meet his grandkids? I think these things consume him more than he admits. He might also say watching me live with fear he cannot take away from me is the worst.
But we know we cannot let darkness overcome the light, so we walk on down the road. We celebrate what has been a very good and blessed week for us. We acknowledge how uplifted we have been by our friends and community. Every little bit of that support has mattered and still does. We thank God we have supportive families, dedicated friends, and clean scans.
We promise we will try to be better about dealing with the scares – and we know there will be more scares. With each one I will try to do better about keeping them to myself. My friends and family might think we are The Boy Who Cried Wolf if we keep this up and we can’t bear to lose your support! Hopefully, our story won’t end with the actual wolf coming back.
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