“People don’t realize there is a difference between anxiety and scanxiety. For those of us with scanxiety, it’s not about what MIGHT happen. It’s about what DID happen. For us it’s not so much about worrying, it’s about REMEMBERING.”
When you become a part of the “cancer club” you start learning terms you didn’t even know existed. I came across this one the other day, and it summed everything I have been feeling the past few weeks so very perfectly.
Brody is literally three weeks away from his final chemo. His last treatment. This comes with so many mixed emotions. I know what you are all thinking- shouldn’t you be ecstatic? Of course I am, but I am also petrified. Right now we are just taking things day by day, oftentimes hour by hour. That is the new normal, and it is how we survive. We hesitate to plan for anything more than a few days in advance, and even then we always provide a disclaimer that we may have to drop any plans last minute. We are terrified to make plans for the summer. We had plans before. We had a lot of plans. Plans that Brody still asks about. Plans that never came to fruition because of the circumstances. I don’t know if I will ever truly be ready to “make plans.”
At the same time I also feel like we live in this naive little bubble. Right now everything is “ok” in our world. Right now I look at my little boy and assume there is no cancer. He had the surgery, he is going through chemo, he is healthy. But for all I know, that poison may still be hiding somewhere inside of him. And the only way we will know this is his scans. The last time he had a scan was some of the HARDEST 36 hours. I couldn’t eat, couldn’t sleep, couldn’t concentrate…but mostly I couldn’t control it. I couldn’t control the outcome. You can try to go in with the best positive attitude. You can hear people tell you everything will be fine. You can hear people give you your odds, which are better than most. But you remember. You remember those last scans. The scans where the doctors told you it’s most likely constipation. The scans where the doctors were confident that if the spots on his lungs were cancer they would be gone. But it wasn’t constipation, and those spots weren’t gone. You can give me all of the odds in the world, but one odd will always rear its ugly head at me. 500 kids a year in America get this cancer. It is more prevalent in girls. It is more prevalent in African American children. It most often emerges at the age of the three. So here I am with my 4 year old Caucasian boy with a cancer that he wasn’t “supposed” to get- so don’t tell me about odds.
The end of treatment also ends my constant contact with his team. It is kind of like we are kicked off the island and we have to paddle our way back to shore, but we are supposed to be excited that we got off the island! Yep it’s great to be off the island, but how the heck do we get to the shore? And once we get to shore- then what? Will there be people there to help us get our crap together?
The hardest part is knowing we will be going through this every three months. Please don’t get me wrong- we are in a position that most parents of kids with cancer would be ecstatic to be in, but it’s still scary as hell.
