Day 377

This hasn’t been my best day. As the day progressed, I found it harder to reclaim my gratitude. As I found it harder to reclaim my gratitude, my guilt grew. And so on.

I began the day on the Ringling Bridge with a new Wednesday walking friend. It was cold and we laughed a lot, which felt wonderful. But as the morning unfolded, my body started to feel weaker, and my sadness grew. After last night’s historic State of the Union address, during which President Obama said “Let’s make America the country that cures cancer once and for all,” the childhood cancer community was extremely active on social media. Groups were launching initiatives and contacting representatives, trying to capitalize on the energy of the moment. Childhood cancer research only receives 4% of federal cancer funding. It’s a huge disparity.

With such activity, however, came stories. Lots of stories. Tragedies. Losses. And in the moms’ group lately, there have been so many relapses. So much fear.

I canceled a brunch I was supposed to attend with my friends. I couldn’t focus on work very effectively, though I managed to accomplish a few key tasks. I tried to center myself just before picking up the kids. Benjamin is currently the picture of health, just like his big brother. We are surrounded by love and support and organic food and supplements and every single thing that we need. We are doing just fine. Be grateful. Be grateful. Be grateful. Come on! You’re not grateful enough yet! What’s wrong with you? 

I couldn’t shake it. Banyan started flag football today at our local YMCA, which is where we have been exercising. Benjamin and I had a free hour, so we worked out together. Even though my body felt weak, the movement and cortisol release felt really nice, and it lifted my spirits tremendously to see Benjamin enjoying the strength of his miraculous body. I watched him closely. Look at this boy. He is just fine. Be grateful. 

What I saw were two more bruises, and what looked like a tiny bit of dried blood in his nostril. My heart rate stayed elevated long after getting off of the treadmill. I gave him a petichiae test right there in the gym, scratching the inside of his elbow. Nothing. His platelets are fine. He is fine! He is fine. 

Michael reminded me that it’s cold outside; lots of kids get little nosebleeds when it’s cold. The blood had obviously clotted, hence its dried state. And there was such a minute amount of it. The bruises are in logical places, there aren’t too many, they aren’t off color. Zero petichiae erupted from my test. And he’s still taking daily chemotherapy, for goodness sake. He is fine. FINE. 

Both boys had a ton of homework and I was feeling progressively worse. I canceled plans to see a movie with Gana and Kathy–one I’d been looking forward to–and hunkered down with middle school math and some immune enhancement. Two things are crystal clear to me: I need more sleep, and I need a break from the moms’ group. This has happened before, and I’m sure I’ll be back. I love those women fiercely. But there is only so much relapse I can absorb before it wrecks me, body and soul. Then comes the guilt: How dare I feel wrecked? My boy is fine. No relapse here. These women need my support! Pull yourself together!

I hesitated even posting such honest inner dialogue here, because the last time I did, I was given offers of massage and group fitness and other forms of self-care. These offers, while made with such kindness and concern, fed my guilt even further. I appreciate my friends and family and their efforts to take care of me–Lord knows there are plenty of folks who don’t have it nearly as good as I do–but this is clearly an ebb and flow cycle I must learn to deal with on my own. Self-care is a piece of it, but gratitude is bigger. Bigger still, perhaps, is acceptance. There will be days that feel easier than others. This isn’t new information; it was true before leukemia. It just feels different now. I will play on repeat these words as I carry myself to sleep: In this moment, we are healthy. In this moment, we are supported. In this moment, we have all that we need.