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“You here for anything in particular?” Sean asks, reaching for the water pitcher and cup sitting on a rolling table. “Visiting someone?”
“I’m here for work,” I say, figuring it won’t hurt to get Sean’s opinion on the project. He’d older than my demographic, but cancer is cancer.
“Interesting,” Sean offers me a cup, too, and I hold up my coffee as a “no thanks, I’m good” gesture.
“I’m a therapist. My specialty is children and teens diagnosed with cancer.” I say and take a sip. “My brother does a lot of volunteer work with the pediatric unit here and asked if I’d come talk to them about building up their in-house therapy options for young patients.” It’s a piece of their patient care that is often overlooked, but I don’t say that to Sean.
“Are you going to be moving here and taking over?” Sean stares at me as though he can see into my soul and my past.
“No, sir,” I say. “Just consulting. I have my practice back home. This is just a favor for my brother and my mom.”
“You’re close to your family?”
This conversation is feeling a little like a job interview, but Sean is nice enough and I know all too well that hospitals are lonely places.
“We aren’t as close as they’d like us to be,” I admit, and the words seem to bring on an ache in my phantom ankle and shin.
“Why not?”
“That’s personal, sir.”
Sean nods as if my answer is acceptable to him, which is ridiculous. This is my private life, and I’m allowed to share or withhold whatever information I see fit. Sean pulls a cellphone out of his pants pocket and checks the time before laying it flat on the table next to his water.
“Why cancer?” He asks, “And why kids with cancer? Not an easy job.”
It isn’t easy, not at all, but it’s necessary. Cognitive psychotherapy, supportive psychotherapy, psycho educational programs, and family therapy are all considered standard of care for childhood cancer patients. Studies show they improve the psychological adjustment of parents and patients. That shouldn’t have to wait until kids are out of the hospital or off the oncology floor. It shouldn’t be left up to referrals that can take months and get lost in the shuffle.
These supports are vital and should be available where the children are most vulnerable and in need of help. Between the pain and the fear, kids are liable to lash out at anyone near them. That most often means family members. I know from experience, too, that the fear and anxiety the family already feels about a child’s diagnosis and treatment can prevent them from being the best support their child needs. That isn’t all parents. It isn’t all families, but I’m a big proponent of therapy for everyone involved in a cancer diagnosis, the patient and their family, and therapy early. A prophylactic measure.
“I was diagnosed with osteosarcoma the summer after I turned sixteen.” I sip from my coffee and relish the too-hot burn of the liquid as I swallow. “I was scared, I was in pain, and so were my siblings. So was my mother. I was constantly stuck between lashing out at them when things were rough, and feeling like I couldn’t let them know how I felt because it was already too much for them. By the time I found myself a good, qualified therapist, the damage had been done.” We don’t know how to talk to each other anymore. We don’t know how to support each other or be a family. Love has nothing to do with it.
If I’d found Dr. Shire earlier, maybe I wouldn’t feel so much guilt around my brother’s success. Maybe I’d have been more supportive of Vic’s career and less angry at the loss of my own. Maybe it wouldn’t take extreme acts of guilt to get me to cheer my twin on at games. Maybe we’d know how to talk, how to communicate. And maybe I’d want to spend more time with a family that I know loves me, but that I still struggle to be around.
“Cancer is a tough diagnosis. It’s tough on us, the ones fighting, and it’s tough on the ones who love us and can’t do anything to change what we’re going through.” Sean leans back in his chair and closes his eyes. “Thank you for telling me. You didn’t have to.”
“I didn’t,” I agree, but I wanted to. Cancer is an exclusive club. No one wants to belong, but the only ones who get it are the ones who live through it. Sean mentioned he had a daughter. One old enough to talk to the nurses. I wonder how she’s handling all of this. I wonder if he feels like he needs to downplay the pain and the discomfort and the fear. If he hears her crying outside his room or sees the redness around her eyes even when she tries to hide it. I won’t ask. Stark lines bracket Sean’s mouth. I know what those lines mean. “Want me to get a nurse?”
“It’s just some nausea,” Sean says. He’s holding his body still in his seat, moving his mouth only the smallest bit as he speaks. “Day three post treatment is always the worst for me. Especially when I forget to hydrate.”
I never could stave off the nausea, no matter how hard I tried to force it down. Nothing helped. Not the sea bands, not ice chips, not even throwing up. I had one nurse who would douse a cotton ball in isopropyl alcohol and hold it under my nose. That sometimes brought me a bit of relief.
“I used to struggle from hour twenty-four to seventy-two.” I say. I refill the cup on the table so Sean can grab it when he wants to. “Then I’d feel better until my next round.”
“How many rounds did you do?”
“I did fifteen cycles of VDC/IE. Every three weeks for about a year. Three rounds before my first surgery and then twelve rounds after.” I can still remember the warmth of the drugs going into my body. Treatment often left me feeling lightheaded and sleepy. I dozed through most sessions. Which meant Vic, who came to the first few, stopped sitting with me during treatment. It was mom who stayed and read her mysteries while I slept. Mom, who brushed my hair back from my sweaty forehead as I lost everything in my stomach. Mom, who spent a fortune on foods just trying to find something, anything, I’d eat. And all I’d wanted was for her to go away.
“I come in once a month,” Sean says. “The tumor surprised us all, especially my daughter. I was told a few rounds after they took it out would be a good insurance policy.”
“I’ve heard similar,” I say. “Do you want me to go?”
“I carry a lot of guilt,” Sean says as if I haven’t spoken. He takes a small sip of water, eyes still closed. I lean over and dim the overhead lights. The room is still bright thanks to a large window, but at least the fluorescents won’t exacerbate Sean’s discomfort. “I was sick for months. My stomach, my rear… something wasn’t right with my digestion. My daughter knew. She hasn’t lived with me in over a decade and she knew something was wrong, but I put off seeing anyone. It was just a bug, an upset stomach, getting older, you know? I didn’t see anyone, no matter how many times she asked me to. I just kept putting it off.”
I’ve always been aware that hockey, specifically my invitation to the USHL, was part of the reason I was diagnosed so quickly. When I’d started feeling weakness in my lower leg, followed by some redness and swelling, it was easy to write it off as a game or practice injury. I missed some of the initial symptoms of fatigue and pain because my body was always being pushed to the limit, but by the time I was limping with pain knifing into my shin, I had begged to see the doctor. I needed, I thought, an antibiotic or something, so I’d be healed in time to travel. I’d been in Urgent Care that evening and the on-call doctor had recognized the tumor on my X-rays. The biopsy had been less than a week later.
“My doctors thought it was an infection caused by a fistula, a tear in my insides. No one knew it was cancer until I was naked on the table with them pulling a softball sized tumor out of my bladder. And there’s my baby girl in the waiting room, getting the news that it’s cancer and that they’ve removed my bladder while I’m still in la la land.” Sean lifts a hand and pats his hip. “I’ll have an ostomy bag for the rest of my life, and when I woke up in the ICU, I was embarrassed that my daughter had heard about those parts of my body. Mortified that she’d had to sit there by herself and decide what to do because I’d put off the doctor for so long.”
“It sounds like the tumor would have been a surprise even if you’d gone in earlier,” I say, imagining the terror Sean must have felt. I’ve had surgeries. Hell, I had my leg amputated, but never had I woken up without body parts I hadn’t expected to lose.
