Thursday, August 8, 2013

Masks and Possibilities

When Lindsay was going through chemo, she was severely immune-suppressed. So severe, in fact, that she was required to wear a heavy-duty mask when she left her hospital room.

She hated the mask, but it was worth it for the rare chance to explore the hospital.

Yesterday was Lindsay's semi-annual oncology check up. She was coughing and had to wear a mask, this time to protect the kids around her.


She didn't love the mask, and I felt a little guilty making her wear it. For me, it brought back memories of masks worn years ago. Memories that I didn't feel the need to share with her. Memories of a time when a simple cold could have landed her in the pediatric ICU. Or worse. Today was about focusing on possibilities, not lingering in what was.

The outpatient clinic where Lindsay goes for follow up is in the hospital on the same floor as the inpatient wing. This is where we lived for something like 159 nights in the hospital. I can't help but feel a little nostalgic going back.

If Lindsay feels nostalgic, she's not letting on. In fact, she is more anxious now than she was when she was going in for weekly or monthly visits. Blood draw, temperature, physical exam. It could be a lot worse, but I'd never tell her that. She's earned her medical anxiety, and my job isn't to tell her how to feel. 

Two nights ago, the night before the hospital visit, Lindsay couldn't sleep. "Mom, I'm really scared." So to prepare, we talked through what would happen. "I'll wake up. Brush my teeth. Get dressed." What's next? "We'll get in the car. We'll get a doughnut (a hospital tradition). We'll drive to the hospital." Do you feel anxious when you think about the drive? "Yes." Would it help to take your iPod? "No. I'll take Harry Potter #7." Haven't you already read that? "This is my second time. I'm almost done. What if I finish it?" Want to take another book, too? "Yes. Then we'll get to the hospital. Elevator. Check in. Playroom." Don't forget vitals. "Oh yeh. Vitals." Does that make you nervous? "No. Blood draw. That makes me nervous." Okay, what can we do to help? "I can squeeze your finger." Okay. What's else?

The list continued and she didn't miss a detail. Anytime something in her listed made her nervous, she told me and we made a plan for what would help. She was noticeably calmer and she had a long list of strategies to help her work through her fears and anxiety. Then she took a melatonin and was able to sleep.

The hospital visit went off without a hitch. We met a new PA and saw our favorite oncologist. The CBC was flawless. The plan was made to reduce visits to once a year and we can start going to the long-term survivors clinic if we prefer. This clinic will screen for relapse, but will also focus more on screening for the late effects of treatment: heart disease, secondary malignancies, delayed or premature puberty, fertility issues, even dental issues. This list used to terrify me. Now I see it for what it is. A list of possibilities. Nothing more.

There are other possibilities too, now. The possibility that this will be a great school year. The possibility that Lindsay will earn a medal in her triathlon this month. The possibility that my two red heads will write a play tomorrow and it will be "dinner and a show" when I arrive home from work. The possibility that Matt and I will continue to fight for cures, that we will continue fundraising, and training for marathons, and spreading awareness to anyone who will listen. The possibility that we will find safer, better treatments. The possibility that we will end this disease once and for all.

Life is full of possibilities. We simply have to embrace them!