Three exclamation points

Source unknown.

"Amanda," my very dear college writing teacher said, her tone almost sizzling with exasperation, "You only get three exclamation points for your entire life! Use them sparingly." (I just used hers, not mine.)  I had written something, probably a seminar paper, on some exciting topic, or I should probably say, some topic I found exciting.

Every sentence was an exclamation. Excitement bubbled through me, and I couldn't figure out how to convey the motion, the enjoyment of whatever topic onto paper, without the punctuation mark.

I think she was trying to point out that if everything is an exclamation, then everything has the same weight. It's all the same level of noise. It's like playing forte or wearing bright colors all the time. The absence of joy, excitement, pure beauty makes all those things much sweeter.

In general, I am an excitable person. Anytime I start to go on about some new whatever, D's cousin waits for a comedic pause and jokes,  "Is this your favorite?" Not my "new favorite," but a favorite. Things should be relished, tastes and words rolled on the tongue, sounds repeated, views captured. Life's too short to not press joy out the mundane. I have a lot of favorites.

Everything's kind of become beige this last year. In those frantic moments of realization (you can't keep travelling, you can't move to Austin and take care of duck, you can't go into the mountains much), my favorite things kept getting shifted from daily happenings to unhappenings.

Deep into it, my brain some how turned off its exclamation points. Zest turned into zilch. I didn't notice it at first.



The internal energy, the fire smoldered to ashes, and the heaviness of swelling and grieving grew into the new normal. I feel fire now. Each moment is punctuated with exclamation marks.

That new tabletop game! Favorite! Walking to find Christmas lights! Favorite! Bean soup like my mom's! Favorite! Swimming! Favorite!  D! Favorite! Spontaneous hug from E! Favorite!

As the fluid gets pumped from me, as circulation returns, my brain wakes up, and my soul remembers the electricity of flow. Life is motion. The time for treading water is at an end.

2013 was a hard year. It filled its self with so much waiting and loss. Punctuated with joy, it was just kind enough and just sweet enough to make me grow and learn. My biggest lessons:

1. I don't get to pick where the wind blows!
2. I am stronger and more resilient than I know!
3. I will adapt!

This year, I will take for myself and for D. It will be one of learning to live life without pressure, but with motion and energy. So here's to 2014! Who counts exclamation points, anyways, and who knows what I'll learn? I've got a whole year to figure it out :)

Happy early New Year! How was 2013 for you? Did you learn anything? What do you want to learn next year?

Happy New Year!

The breathing rooms

So small and yet powerful :)

The machine made it. We've been trained on it, and I have been using it twice a day. The machine is smaller, slicker, and lighter than I expected. The suit that I wear is like Dr. Octo, a bear, and an old school scuba diver got together and had a love child. For an hour twice a day, it whirs and sucks air as if it were the cutest little ewok pretending to be Darth Vader. Oddly hypnotic and soothing, I stare at the ceiling or my eyelids connected to my prosthetic lymph system.

Selfie in suit

It reminds me of other rooms though. Hospital rooms sound like this when you are recovering from surgery, and they have you wired into leg pumps to prevent clots. Nursing homes sound like this when you are hanging out with people hoping to go home. C's room sounded like this the week before she died.

I had taken a job in Portland. My friend called to tell me that C wasn't doing well, and it was near. It was coming. D drove me south right after work on Friday. We drove through the fog, thick and hoary. The passes shot us up and out of it for brief moments. Within seconds, we'd sink back down into blank freezing fog.

The last pass home, we crested the peak. The moon hung bright, so close, I lifted my hand up to touch it, and behind it, around it , the stars spun a radiant dress. Clouds whirled dances above the valley floor. The brightness cast shadows on the ridges that stretched out beyond the valley to the coast. It was a perfect night: cold, clear, and calm.

The next day, I went to see C. Her window looked up the mountain, and the last fall leaves clung stubbornly to the stubby oaks. The room breathed. C's breath came in jagged gasps and whistles. Her hands were cold. Her lips pale purple: not blue, nor pink. Her shrunken frame looked out of place in the bed burdened by her fluid filled gut. Her "pregnancy" with cancer, as she called it, pressed on her lungs. Her fatness was what the doctor's called it when they misdiagnosed her. There was no insurance for the tests.

C, my writing buddy, my soul sister, my purple-shirted friend, always the optimist lay afraid in the breathing room, and I sat with her. I was 23. I knew little of death. I didn't know what to say. I just held her hand, listened to her words, and the oxygen machine whirred. She fell asleep. I kissed her one last time, and I left. C died that week. She was gone before I came back.

In my room, it's hard not to hear the soothing, hypnotic breath of the machine and think of all of those other rooms. This room is my sanctuary. It's the color of a winter run off, cool, green, blue and milky. The breath is breathing my lymph around, bringing relief to my heavy painful limbs and kindling hope that I might get a head of this condition. 

Maybe when I've been hooked up a while, the old memories will fade, and I will remember C just for her laugh, her poetry, and her image as God's jester dressed up for the feast. Right now, the machine reminds me of her at the end, her waiting to go, her being scared and, in an odd way, relieved. It's so strange, but instead of stress and fear, I feel nothing, but a sad and quiet peace. It's a good place to spend a while each day, alone, peaceful, and waiting.

This last Sunday, D drove us back from a quick visit to Portland. The fog hung thick, almost an eerie pale green.  As we wound up the mountain highway, the road punched us through the fog. Ahead, just above the next peak, framed by billowy brilliant night clouds, a single shooting star slipped from space. I fancy it was C saying, "Merry Christmas. Happy Belated Hanukkah. Happy Kwanzaa. Joyful Solstice. Happy New Year. God loves my laugh. Hugs and kisses."

R and R

Bed Hair 1

Last night, I slept for 10 and a half hours: 9, the night before that. Vacation has settled around me, and I am content with my days. It's so crazy to wake up when I want, go to bed when I want, eat when I want, drink when I want, etc. How did I ever get bored during summer vacation?

A nagging voice in my head keeps telling me to get up and be PRODUCTIVE. You only get so many days, you know. There's a toilet to scrub, food to make, and drawers and cupboards to organize.  The list of things I should do is endless. The list of things I want to do is endless too: write a novel (bodice ripper or fantasy?), knit/crochet a sweater, make Christmas presents, read books, work out and on and on and on.

Mostly, I am eating too much blissful food, sleeping, cuddling with my dogs, playing video games, fostering a third dog, hanging out with D and E, and baking.

Bed hair 2

My OT told me to just enjoy it. She said, "Do what you want to do. Don't keep busy. Don't feel like you have to be PRODUCTIVE."  I needed to hear that, as I had felt guilty for my week of relaxing that I had already taken.

At the beginning of the big C, 8.75 years ago, D and I moved to Texas. We had some sort of party and a very sweet friend of the family told me about his relative who beat cancer. He told me about how each day the relative woke up and lived it like it would be the last. The relative was positive and inspired people. The relative spent all day, go, go, going. "That's what you have to do to stay here," he said. In these words, I heard his deep, abiding love for this person and his deep, abiding fear.

I feel this pressure in my chest to take each moment and make it meaningful. It spurs me on to make a mark and live life fully. Life is a gift, and it shouldn't be wasted. I think the worrying symptoms I was feeling two weeks ago were exhaustion. What if part of living is learning that resting with your family in your home by the Christmas tree is just as important as the flurry of activity?  What if it's the breath in, and it's just as important as the exhale?

Here's to this holiday season, and here's to vacation. The darkest of winter is the time of rebirth. 

"Farewell the moon, welcome the sun." Johnny Cunningham, "A Winter's Talisman.

Night time stroll during the first snow

Secrets

The day after Thanksgiving is our traditional Christmas tree day. We usually go up high in the mountains outside of where the firs and pines stretch out across the peaks. Like D says, Christmas trees grow on trees here. As we wind up the narrow logging and fire roads, one of us dodges rocks, branches, potholes, and the other looks for "the tree."

It may seem early for these sorts of things, but when I am working I really only get to see the tree on the weekends and in the evening. This year I have a full five weeks with the tree. I almost pushed it off. Tradition strong armed us out above the clouds. 

On a normally joy-filled day, in the back of my head, in my soul, I kept a secret though. It's a secret that's been building for weeks. I'm tired. I've been losing my balance. I've been having headaches. I've been craving sugar. I'm getting worried.

It's easy to pull off each symptom and think about it logically. I had a massive infection the entire month of October. I couldn't exercise, and my balance is a skill I have to hone: it's not an innate right. I've been stressed out, and I stress eat all sorts of things I shouldn't. I've been pushing myself hard to wrap up things at my old work so I've not been resting well, and I HAVEN'T been exercising.

The three week rule can't be used until I address the likely culprits. So I will be spending much of my vacation waking up without an alarm and moving my muscles. Three weeks starts today.

I can't talk to D right now about these things. Each symptom promises to overwhelm him with worry. My friends have typically had two responses, "It's nothing. You shouldn't think that way," or just simply, "three week rule."

The "three week rule" is what I need to hear. "It's nothing. You shouldn't THINK that way," is why I keep secrets. Cancer doesn't care what you think about it. Positivity doesn't affect survivorship. I held my good positive friend's hand as she died from stage IV cancer. She was afraid, unprepared, lonely, and desperate. She really "thought" she could beat it, and she spent so much time not thinking about death that it took her by surprise. 

I've always tried to walk the middle ground. Both options are possible, and I have to be OK with both outcomes. This isn't positive or negative thinking. It's just thinking. It's just looking at the pieces of the puzzle and seeing possibilities not certainties.

In non-cancer life, my husband and I were remodeling the bathroom. We had two options for the sink, a cheap one that looked like someone had updated an 80s plan for what a sink should be and a nice new one with clean modern lines. We really didn't have the money so the 80s-come-again sink made sense, but the one I loved was the one I loved. I told D to make the choice, because I didn't care which sink went in. Either decision was the correct one, but the correct one for a different reason.

I think about my cancers this way. They may kill me, they may not. My thinking about them has no control over the outcome. It's salt over my shoulder. I have to empty myself of those thoughts that nag and beg at me. They make me tired. Keeping secrets is hard. Both outcomes are the correct one, but they are correct for different reasons.

If you are interested in positivity and cancer, check out this article. For a thought provoking short video on the topic, check out this RSA animation.

Good byes

A late fall hike

I wouldn't have gotten my job without her. She was my student. My boss assigned me to her as she had an ABA background, and my boss felt I would be a better fit for me. If she hadn't been my student, I wouldn't be where I am at now, and I wouldn't have been at my amazing work during my last cancer.

Now, she is leaving. Her husband's taken a job on another coast where houses are as palatial as the summer's soaring temperatures. It was easier when we were leaving this place together. Now she gets on the plane, and I stay here. I've never been the friend who's been left behind. I've always been the one to do the leaving.

I'm so happy she is going. She can work with her degree there. If she chooses not to work, she can stay home with her kiddos. Mostly, I am happy for her.

Good byes are hard though. I feel like I've said them to her 5 million times since I found out she was leaving for sure. I can't really express how much I miss her and how grateful I am to her for who she is and how she lives.

She is one of my rocks; a co-survivor who walked my second cancer with me. Much as Rose and Sunshine's mom walked with me through my first journey, Rainbow's mom was there as I struggled this last time.  She arranged meals, took me to lunch, and kept me sane.

She taught me grace. She reawakened my thirst for faith, and she enlarged my heart to make room for tolerance. There's someone in her new place waiting for these lessons, and I wish them all the best.  They were hard. They painfully bent, twisted, and stretched me into someone I had forgotten I was.

S, fly where you are needed and know that you are perfectly suited to whatever task you face. I will miss you, but I'm glad you are going away.

A token

My life with bread

During my first trip riding my chemo chair, we lived at my parents house in Texas. It was summer. The hot sticky heat and my chemo body did not get along. I'd go from the house to a gifted car, and the world would spin as my limbs grew heavy: my body's vain attempt to faint away from the sweltering sun. The heat never really stops. It takes a deep breath in in the morning, and it exhales sauna well past midnight.

Random card I picked sort of spooky

In Texas, summer is like Winter everywhere else. Few people go out. They stay in. I stayed in, unless I was working or spending time with family and friends (particularly Rose and her mother). I watched too much "Scrubs," I read Janet Evanovich and Terry Pratchett. I wrote buckets of poetry. Apparently, I also used tarot cards. (I have no memories of the cards...but D swears he'd come home from work, and I'd be puzzling over the Fool, the five of cups, the up side down empress, and the jack of wands.)

Eventually, I figured out that I needed something creative to do. I needed to learn something new. I risked my mind rotting as my body rested. I needed a goal, a skill, something I could fuss over and perfect in my spaceship away from murky heat. Somehow, someway, I started baking. Everyone would be off at work, and I would bake. I made loaf, after loaf, after loaf of bread. When I mastered the instant yeast variety, I started my own sourdough starter, and I then made loaf after loaf of sourdough bread.

Miche was my favorite. A giant boule of bread would rest on the counter after I had tended to it for 16 hours stretching, pounding, and pulling the gluten into long elastic chains. D came home from work to find me with 5 or 6 different types of loaves lined up on the counter in various states of doneness. My arms, covered with flour and bits of dough, my nose dusted with white, and my hands stirring the starter. "I love sourdough. With all the little yeast beasts, it's like I have billions of friends."

I started my starter again. In the last week and a half, I've made sugar cookies, biscuits, bread, and bagels. My joy soars as I sink my left hand into the warm, breath filled dough.  Before I bake them, I can feel the life thrumming in their fibers. The energy of everything captured in flour, water, salt and yeast. It heals me to smell it. It heals me to touch it. In the process, I find flow.

So what that I can't knead it with my right hand? That's what clean elbows and forearms are for. So what if I have to use a stand mixer? Who cares? I can still bake, and I am glad I found that out again.

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.