Googling survival rates of people with my cancer: Is that helpful?

Rosebud. Jüri Mildeberg- Mildebergius. 
Painter, graphic artist, illustrator. 

Jüri lives in a small village in the Estonian countryside with his wife Piret, daughters Susanna and Saara, and two dogs Leijona and Tonttu (Lion and Elf). 

This morning I catch myself Googling survival rates for the cancer I have and end up feeling anxious about time. Later, I tell my husband Terry what I did and how I feel. He asks, “Was it helpful?”

Part of the answer to Terry’s question is “it’s a teeny bit helpful.” 

After last night’s heaping bowl of Neopolitan ice cream and knowing I’ve skipped my daily walking practice for several weeks, seeing cancer statistic reality in stark black and white renews my commitment to self-care. To do my wellness part. Sure, that’s helpful.

If I tell the truth, the answer to the question about that Google is “no.” 

It’s not helpful to head off into the future awfulizing and imagining what happens if I’m high risk on the follicular non-Hodgkin's lymphoma FLIPI index. You know, jumping on the thinking that I need to be hyper-vigilant, concerned, or worried as part of the I-have-an-incurable-cancer project.

Worry is such a waste of my time and energy.

I quickly turn my thinking around. 

Here’s what I remember.

The first two treatments were rigorous. My side effects were severe. I felt like I was just surviving. I had multiple large tumors. It’s so important saying this part out loud because I know I am not in denial about my situation nor am I a victim to cancer. Telling this part makes what happened next feel like a miracle.

When I go to the third treatment, I decide I will participate in my healing.

While sitting in the clinic waiting for my infusion, I begin my usual meditation. I begin to wish healing for myself and all others. I close my eyes and repeat, “May I heal. May all my friends (in this room) heal. May all people with cancer heal.” 

But then, I have this thought. Why not work with my infusion in a loving way. 

When my cyclophosphamide drip begins (the first of 5 meds in the R-CHOP regimen), I consciously eye and thank each drip for the healing and recovery that is in progress. I think about the lymphoma cancer cells and the drips with love. I close my eyes and see the tumors breaking up. (Later, I actually see the expelled pieces of tumor when I went to the bathroom.)

The first scan after my treatment surprises my doctor. “This is remarkable. I didn’t expect the tumors to be gone.” 

Three years of treatment later, my scans show no detectable cancer growth.

I share my Google apprehension and choice to love my cancer with friends today. Someone comes up to me afterward and says, “Susan, it sounds like your relationship with cancer is working.”

I like the idea of thinking of myself in relationship with cancer. I have a choice about how I respond to what shows up in my life and body. That's empowering.

The fib I told the kids about monsters and dragons.

Leonardo scares the little boy. 

From the book Leonardo the Terrible Monster, Mo Willems. 

Facts about Leonardo. 

Willems' wonderful doodlicious blog.  Find him on Facebook and Twitter.

Part one is here...I left off yesterday telling you that I need to tell the kids the truth about monster spray. This is what happened.  

We sat in a circle and did our meditation. (I think we set a new record. As timekeeper, I measured a few seconds over 4 minutes.)  

Then I began. 

“Remember when we read Leonardo the Terrible Monster? Does anyone recall that book?” Eyes light up and Elijah exclaims, “The monster and the boy become friends. Instead of scaring him, Leonardo likes him.” 

“Yes, they become friends. I want to talk more about that.”  

Ansel interrupts, “Did you bring the monster spray?”  

With that, I hear a chorus of, “Did you bring the monster spray, did you bring it?” 

I take a deep breath, open my eyes wide and say, “I didn’t bring the monster spray because I fibbed.” The kids are quiet. 

“Does anyone know what a fib is?” I ask. 

“Does it mean being nice?” asks Peyton. 

“No. Fib means lie. Do you know what that it means to lie?” They all know. 

“It’s when I tell my parents I do something and I don’t do it.” 

“I make up a story.” 

“I say I cleaned my room, but I didn’t.” 

Brennyn arrives late while we’re talking about this. Mason yells to her as she enters the room, “Susan lied!”  

Brennyn looks at me and I sheepishly nod my head yes, gesture my hands open and say, “Yep. Sorry. I’m telling the truth now. There’s no such thing as a spray to get rid of monsters. However, I do have an idea about what we can do when we’re afraid of monsters.” 

I have their rapt attention.  

“Monsters are in our minds. It’s what we think. Those scary monsters and dragons are imagined. But listen to this. You have a super power! You can change your thoughts. Remember when Leonardo changes his mind and decides to be friends with the boy?” They remember.

I look around the circle and can see that they’re interested.  

“Let’s try something. Ansel, tell me about the monster in your dream.” 

“A giant crab with a snake tail smacks me,” he says while putting his hands over his eyes. 

“Oh, that’s scary, Ansel,” and I pause. 

“Children, what can we change about a giant crab with a smacking snake tail to make it less scary? How can we make that monster nice? Does anyone have any ideas?” 

Ansel thinks and says, “Ask it for a hug.” 

“Yes, Ansel! That’s it.” The other kids catch on and enthusiastically share other ideas. 

“Give it a drink,” Maggie says. 

“I know. Give it a piece of paper that says, ‘I like you’ on it. Like the friendship messages,” says Mason. 

“Invite it to go fishing and fish for it. Maybe it’s hungry.” 

“Make a toy for it. A colorful one.” 

Maggie tells us about her dragon. “It’s not really bad, it just looks scary.” 

“I understand what you mean, Maggie.” I tell her about the spider in my living room. (You know, that baby tarantula I wrote about yesterday.)  

“Maggie, it's hairy legs, and stick-straight-up pedipalps scare me. I don't like how they look.” I tell her when I saw the spider and was afraid, I thought of Charlotte. 

“Have you heard of Charlotte’s Web?" She and the others nod yes. “Well, when I carried the spider outdoors, I changed my scary thought. I imagined it was Charlotte’s friend.” 

We talk about each monster or dragon and help each other brainstorm them as less scary and more kind. Jax is the last to share.  

“My monster, well it’s a dark shadow that hangs over my bed.” 

I ask, “What would make that dark shadow less scary?” Jax doesn't know. Maggie helps.

“Jax, shine a light on it.” Jax likes that idea, he has a flashlight.  

I can hardly believe the remarkableness of Maggie's suggestion. Shining a light on Jax's shadow is a metaphor for shining a light on our fears. I smile and suggest they practice making their monsters less scary. 

I know they’ll tell me what happens when I see them next week.

NOTE 
I followed up with another lesson. I not only fibbed, I realized that I was encouraging the kids to use a harmful action to calm their fear. I don't want to encourage spraying. I know that I wouldn't spray pesticides on insects or harm other living creatures. Or made up ones, like monsters.