Wednesday, January 14, 2015

The Roller Coaster

Yesterday was one of those days where you go from extreme to extreme. Elation to depression, in a matter of seconds. That's fairly typical for a cancer parent.

Two days ago, it had been fairly clear that we'd be discharged either yesterday or today. So yesterday morning, I told the doctor who did rounds that Adi's brother was having a birthday party yesterday afternoon, so we really wanted him to be at home, and ultimately she agreed that instead of a day in hospital with no antibiotics (that is, just for observation), she'd let us go home. But she couldn't possibly remove his PICC-line, because, "What if he needs it?"

"You realize it's about to come out on its own, right?"

"If you want to go home today, I'm not removing the PICC-line."

I said fine. And then I went upstairs to oncology to tell our doctor and have him remove the line, because, DUH. Anyway, I was in a great mood when I got upstairs, and then I saw my friend who told me that she was waiting for bone marrow results for her son, and she'd been a wreck, especially after what happened to T, another child on the ward.

"How is T?" I asked, and she looked at me.

"You didn't know?"

"I mean, I know he relapsed, but I..."

"Saturday night," she said, and it was like a kick in the stomach. Again. Again. Again. Because T. was a kid who was ALIVE. Who was ALWAYS talking, always running around, always smiling, always laughing. Always kind, always going.

"I thought you knew," my friend said helplessly, and I couldn't make my mouth say all the words inside me, and I think I said something, but all I could think was, "I need my husband. I need Guy," because it hurt so much in that instant, and in the middle of being so happy and excited that Adi was going home, I just wanted to curl up on the floor and cry.

And the oncologist took out Adi's PICC-line, because DUH, and we went home, and Yoni had an amazing birthday party and Guy broke the Internet in our house and Adi was home and everything was great and I couldn't stop smiling at the party and when Mambo Number 5 came on, I danced(because DUH), much to the embarrassment of my children, and everything was wonderful, and then I remembered and it was like a kick in the stomach. Again.

And this is how it is. Because as happy as we are, there is always a tiny screaming terror in the back somewhere that we can ignore a lot of the time, maybe even most of the time, but it's there, and it's waiting, just waiting, to kick me in the stomach. Again.


2 comments:

isf said...

Yes.

My version of what you said: Working at the Arizona Oncology Foundation is good for me; it marks me as a survivor; it is a way of giving back and saying thank you to the folks who helped save my life.I advise patients about the very symptoms I still struggle with --neuropathy, fatigue, etc and hey, I'm an expert. I meet and help newly diagnosed patients select wigs or other less glamorous supplies. But I also meet people with recurrences or totally new unrelated cancers. Living with fear makes me enjoy whatever I can enjoy and adds fervor to my prayers.

Crystal T. said...

YES. I know that feeling well. And every time I hear about another kid who lost the battle, I worry all over again about Jack. I worry that, despite the fact that he is lively and so very HERE, he could just be GONE at any time. And there is nothing I can do.