Squeezing the Most Out of Summer

I am currently at Cincinnati Children's Hospital, sitting in a recliner with SpongeBob SquarePants blaring on the TV above. We officially started the clinical trial today and have to spend the night for monitoring due to their standard protocols for clinical trials. My daughter had her first dose of ACT001, an oral chemo and inhibitor targeting different pathways that lead to the growth of DMGs. One major side effect is nausea, but so far she has tolerated the first dose well. 

Because we aren't sure what side effects my daughter will experience, we (or I really) have been trying to cram in as much fun as possible while she is feeling good. She went to 3 different camps in June. On July 4th, we went bowling and played at the arcade before setting off fireworks in the driveway. My husband, oldest daughter, and I drove to Cincinnati on July 6, and between the clinic visit and her MRI, we went to a Reds game and to the zoo, both of which were a lot of fun. 

Then, after my husband flew home and we finished the MRI, my daughter and I had 4 free days before the next clinic appointment. It's about a 7 hour drive back to North Carolina, and we didn't want to do that. We also didn't want to stay in a hotel eating take-out, so we decided to drive 5 1/2 hours up to Holland, Michigan to visit our friends and stay in their cottage on Lake Michigan. We hung out on the beach, played games, rode dune schooners, and stayed up way too late watching the sun set. It was truly the best way to spend the weekend, and I'm so glad we made the drive. 

Before cancer, we might have done less or been more conservative with our money. But, one effect of cancer is that we have become a little looser. Want overpriced souvenirs from the stadium? Treat yourself! Want a stuffed panda from the zoo shop? Treat yourself! I suppose part of the psychology behind that is that it is our attempt to capture as much joy as we can while we can.  

In my last post, I mentioned that I had been reading No Mud, No Lotus by Thich Nhat Hanh and quoted a morning mantra. There are many more mantras that a monk would have to memorize to practice mindfulness throughout the day. I told my daughter that there is even a mantra to recite when using the bathroom. She thought that finding joy in peeing and pooping was funny, and we've started just saying "joy!" to each other whenever something brings us joy. Farting - joy! Sunset - joy! Beating your mom at Uno - joy! It's just a good reminder of the big and little things that we can take for granted every day. Even all the bathroom jokes are a reminder that we have bodies that function and that is something to be grateful for. 

I am continually grateful for all of our friends and family who annoy us with check ins, force us to make plans, make offers to help, and just do normal things with us. While we haven't experienced a lot of cancer ghosting, there has been some. I try not to think about it too much. There are simply too many other things to worry about, and I don't want to allow myself to dwell on it. So, I appreciate all the stupid memes and check in texts a lot, even if it feels like doing a lot of nothing.

A Song That Makes My Daughter Happy

Imagine Dragons - "Believer" (Kaskade Remix)

From the Porch

One of my favorite coffee cups was a Secret Santa gift from the last Girl Scout volunteer meeting I went to. It is dark blue with white and green cursive that says "Live in the Moment." I use it as a morning reminder of what is important that day. 

A mantra that stood out to me in the current Tich Nhat Hanh book I've been reading, No Mud, No Lotus: The Art of Transforming Suffering, is:

Waking up this morning I smile. 

I have twenty-four hours to live. 

I vow to live them deeply and learn to look at the beings around me with the eyes of compassion.

I've tried to commit this to memory and say it to myself in the morning. 

I've seen other parents say that they wished they had spent less time grieving their child while they were still alive. I think on some level, it is impossible to not feel anticipatory grief. So instead, I am working on acknowledging those feelings when they come up and then shifting my mindset to something else. 

One morning this past week, my youngest slipped into bed as she often does for cuddles. My oldest was at camp and it's was hard to not think that this might be what it's like when she's no longer here and we are just a family of three. I feel so much love for my youngest and yet I couldn't help crying in that moment. I felt it for a bit, and then reminded myself that oldest is not dead. She's at camp, and I'm so happy that she got to go. I will see her tomorrow and get to hear all about the fun she had. 

The feelings came up again later that day when I was in the car. I felt sad, and then looked at my youngest in the back, looked at the sky, the grass, tried to feel grateful for the day, and let feelings pass. 

The reframing is a mental practice I'm trying. I am also working to shift my focus more generally. If we only notice the suffering, that is what we will feel. This blog allows me to release all of the shit feelings I have and to clear my brain so that I am not consumed by them all the time. But as I've written before, there are a lot of good moments too. And it's important to focus on those. 

Yesterday, because it was slated to be 100 degrees for most of the day, I got up early, made coffee, and sat on the front porch. I wanted to enjoy outside before it became oppressive. My oldest joined me with a cup of orange juice and some waffles. We laughed at the mockingbird perched on the top branch of our tree making car alarm noises. It was a nice way to start the day. And despite whatever else I felt that day, it started on a good note. 

Mornings like this are also possible because the low dose of steroids has given us back our kid. She is waking up early like she used to. She comes into bed and reads with me. The other day, she brought me her chrome book so I could look at her latest story idea that she wants to turn into a book. She has been doing things and not just laying in bed looking at her iPad. I love that. 

I am still afraid of what this new treatment will do to her and what it will take from us. But life exists in the now and not in the future or the past, so for now, I am on my porch with my coffee listening to birds and trying to be thankful for the day. 

A Song About Living in the Moment

Lucy Dacus, "Planting Tomatoes"