This is when the world changes.

So happy to be back to normal

My first diagnosis seems ages ago. We were far from both our families, but D's family was at least two thousand miles closer. In those hurried days after the words were first spoken, his mother arrived to support and help us. When they told me I might be infertile. She cried and I did not. Now I get why she cried. I get that grief.

While she was visiting, D's dad took care of his sister, E. Charming Princess. E. Charming Princess has called herself E. Charming Princess since she was a little kid. E. has down syndrome and autism. She doesn't use a lot of words to communicate. When her mom was north, E. told her dad something like, "Nurse Miss Miller Mom. Eleanor Amanda. Hospital. Take care of her." Her words halting as she used her limited vocabulary to describe an unusual and painful situation.

A year later, D and I had moved back to Oregon. I needed health insurance, and his dad graciously let me work at his clinic. One infusion day, no one could pick up E except D and I. So E came to the infusion room. She watched, in fascination, as "nurse barbie" took my weight, blood pressure, and temperature. She held my hand and said, "brave," as the nurse cleaned the port on my chest. She watched as the nurse inserted the giant needle just above my heart. All of it, E took in. She seemed unconcerned, but interested.

Amanda tries to figure out what E says...

That night, cuddled in her bed, her father tucked her in, and he asked her,"E, what'd you do today?" E paused. Her hands stilled from her writing. Her head turned toward him, and she looked up from her work. "Eleanor Amanda. Shot. Heart. Medicine." E's eyes filled with tears. "Eleanor Amanda is getting medicine, E. She's getting medicine to get better.”

People underestimate E all of the time. They think because she doesn't use words to communicate fluidly that she is somehow less than others. She is incapable of employment, success, etc. She will be a child forever. These perceptions are incorrect. E sees everything. She knows everything. She needs support, but she gets it.

My cancer was hard on everyone. Everyone was at a loss for words. The treatments from the outside made me a ghost of myself. No one ever talked about it as eloquently as E. The port sat right above my heart. The chemo dripped into my arteries and veins. These are scary things. I think E is really the only one who processed how scary it was at the time.

E and D at horseback riding.

This week was D's first week back supporting E. It was a week of sharky grins, bubbling laughter, and spontaneous words. She asked me, "schedule" in words instead of sign for the first time in years. Her joy at having her brother home feeds me. It's a window opening as the door of our other plan shuts for now.

Right now, I'm looking for windows everywhere. E was the first window I found. New windows are opening all around us.  The world is filled with endless possibilities. All D and I have to do is breathe and pick which windows to fly out of.

Best laid plans of mice...

Life and wrenches go hand in hand. The events of this last week demonstrated yet again that plans are, well, plans. D can't drive a truck. No truck job, no move to Texas, no nanny-ing for Duck, at least for now. It hurts too much to think about. It was the only and best decision I could make for us staring at our hand. The disappointment eats me from the inside out when I think on it too long.

Everyone has been nothing but unconditionally loving and understanding, and I need that. His family has been amazingly supportive, and my family has rallied around me from afar. I'm kind of just breathing. No planning can happen for a bit so mostly I'm trying to figure out how we can tread water for awhile.

I may be taking the path of least resistance, denial, but I don't feel sucker punched. Every time I start worrying, I count my breaths. In, one. Out, two. In, three. Out, four. I know it's OK to have bad days.

I've had several since I looked at the hand and realized I couldn't take the trick I wanted. I broke down while visiting my oncologist. She kindly listened. I broke down on the phone with my best friend in Texas.  Now, I'm just numb.

It's numbness that I dread.  Anger and sorrow I can deal with. Numbness though settles around me like gloom and fog. There's nowhere to go. There's no where to stay. It's just empty space, and I've turned into the nobody in nowhere land. I have no tools for nothingness.

My second chemo treatment ever took place after a hellish cross country road trip that we undertook so I could get treatment near my family. We arrived the day before my appointment. Car and chemo troubles dogged us from Washington, through Oregon, Nevada, Utah, Colorado, and Texas.

The doctor decided to start chemo immediately. I hadn't expected it. When he left the room, my breath grew quick and ragged. My fingers dug pits into the arms of the chair I sat in. Tears streamed down my face. My mouth tasted like metal and vomit. D and my mom were there I think. I don't remember what they did or did not do. I imagine they spoke to me and tried to calm me down, but I couldn't hear them probably.

My onc nurse saw me, she got down to my eye level, and she took my hand. She said a fair amount to me in about 5 minutes. My memory is jumbled from the conversation. Her words run to

gether seamlessly in my mind connected in some order that I now don’t really understand.

• It's OK to have bad days.
• This is really hard. 
• It's OK to be scared. This is very scary. 
• My friend has breast cancer, and she was out crying cutting the grass with scissors. I told her to go inside and pull the covers over her head. Bad days happen.
• Sitting in that chair is a much braver thing than people realize. 
• So have a bad day, sugar. Just remember to get up tomorrow.

I've gotten so used to living this way. So today was rough? Tomorrow will be better. It's hard to know what to do with numbness. It's not bad. It's not good. It just exists. The situation has drawn it out of me for my own protection, and my lack of activity, due to my elevated finger, feeds it.

Eventually, we will have to lay a new plan. I can't help but think the next plan has to go better than this last one.

Calling on the power of "lasagna"

It's been a rough week at the house. I picked D up from his truck, so excited. The five weeks he's been gone has been rough on both of us. I passed the time by taking care of the dogs, hanging out with friends, and taking massive doses of antibiotics. He passed the time by driving thousands of miles, thinking about how hard it is to be gone, and navigating a morass of new policies, procedures, and politics. I think I had it easier. 

Re-entry has been hard.  His story is his story, and maybe one day he will tell it to you, but for now, all I can say is I've been making tea, cooking favorite dishes, and feeling helpless in the wake of a tsunami of emotion that I didn't expect. 5 weeks is too long to be gone, and I can't imagine how my friend in a military family holds down the fort for months at a time.

Veggie Lasagna

A few years ago, one of my good friend's kids experienced a great, incomprehensible loss. The spouse had died, and my friend traveled thousands of miles to be with her adult child. In the face of the grief and the loss, my friend felt helpless, and she did the only thing that she knew to do. She made lasagna.

Layer by layer, she built the dish, and she told me, as she built it, it became something other than lasagna. She became something beyond herself. She made "the lasagna," the archetype of comfort, as did she became, "the mother."  She became the vessel for all the power of those two words. All the comfort, all the hugs, all the love, couldn't fix that loss. The only thing that she could do was be with her child.

Our house is having a "lasagna moment." Instead of lasagna, its early thanksgiving dishes (mushroom gravy, roasted tofu, stuffing, and mashed potatoes), apple pancakes, spaghetti and vegan sausages, tofu scramble, home fries, pineapple upside down cake, mushroom Cornish pasties, and chocolate cupcakes with coconut whip cream.

I can't make this better. I can't make this easier. I can only write love letters with the tools I have left. I can only be there as things get scarier and scarier.

D. This is the bottom, darling. There's no place to go, but up. I love you, my sweet, and I'll love you forever.

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