Chapter Thirteen, The Time Between (continued)

The day Sam had his radiation simulation (also the day of his lumbar puncture), he got four tattoos. The tiny dots, like blue-black freckles, form a constellation in the shape of a giant 'T' across his belly and down to his groin. The 'T' was the map used for lining up the giant machine that directed the radiation into his brain and spine.

He also had his radiation mask and body mold made. The mask, made of hard plastic mesh, perfectly matched the contours of his face. It was designed to be bolted to the metal table he would lie on for the doses of radiation, keeping his head in the same precise position each time. The body mold was like a rigid foam bed, formed to him and used to hold his limbs and spine in alignment.

The mask was creepy and made me glad he was to be sedated each time.

On April 19 we headed south to spend five days at home. It would be the longest time we'd spend in our house for the next two months.




April 19, 2012 8:24pm
We got home early this afternoon and Sam was so excited to snuggle up in his own bed that he took a 3 hour nap! He really is doing amazingly well. I am so impressed with him.

Quote of the day (as we were driving past someone's burn pile and could smell the smoke in the car):

"Pee-yew! My breath is stinky. Do you know what it stinks like, mom?"

"No, buddy. What does it smell like?"

"It stinks like fire!"


April 20, 2012 9:58am
Results of Sam's lumbar puncture just came back clear!! What that means is there is no evidence of malignant cells in the lower portion of his spine, which is AWESOME news. It isn't going to change his course of treatment, but it does tell us that his cancer isn't as widespread as it could have been


Written to my friend Joe:

10:30am
The fact that we exist at all is such a marvelous wonder. Embracing each second and each connection we make with other humans is imperative. Never has that been more clear to me than now.




6:08pm
We stopped by my hospital for a visit today. It was wonderful to see our people (though I didn't get to see everyone I would have liked to see). Now we're back home, playing hospital. I had an "IV" taped to my arm and an "NG tube" taped to the outside of my nose. Dr. Sam dosed me with lots of "medicine" that only "hurt for a minute". Then, he helped me go to sleep and, magically, when I awoke... all of the tubes were gone! It's so interesting to hear his take on medical care.


April 21, 2012 10:19am
"We can smile, breathe, walk, and eat our meals in a way that allows us to be in touch with the abundance of happiness that is available. We are very good at preparing to live, but not very good at living. We know how to sacrifice ten years for a diploma and we are willing to work very hard to get a job, a car, a house, and so on. But we have difficulty remembering that we are alive in the present moment, the only moment there is for us to be alive." Thich Nhat Hanh


1:23pm
A little orange helicopter just said to me, "Hey, Sam's mom? Do you want to watch me fly so you know how to fly? Watch my wings go round and round." It then flew around the house, complete with swoopy sounds and a soundtrack that included snippets of the Dinosaur Train song 'There's No Place Like Our Nest'.


Next: Chapter Fourteen, Radiation and Percentages