Not my ribbon continued.

My husband’s brain is eating itself. It’s slowly chipping away at the insulation keeping his neurons functioning sweetly and his brain humming. Most days, it is, a side from a memory lapse or four and his hours long naps, it’s easy to forget. But then, there are days like today.

I’m not home. Hank and I are off teaching each other how to train humans and dogs. Each skill we master feeds us.

Honey is there, and Bubbles and Squeak are whistling in their cage, as they undoubtedly dig into a glorious green salad. I am here. He’s there.

Yesterday, his vision greyed out. Today, it is still grey. The on-call neurologist thinks it’s likely some sort of brain issue not an eye issue. Steroids won’t help.

It’s another nail in the coffin of who Dan was. No more dreams of flying, maybe no more driving, maybe no more woodworking or tinkering. How does one even go about facing that type of loss. How does one go on when everything you are is stripped down and you are laid bare?

My cancers were different. I either made it, or after a period of increasing disability, I didn’t. My husband’s disorder is like a daily death...slowly, inexplicably, and inexorably, he becomes someone we don’t recognize.

How do you move on? How do I even help? All I can say is, “I’m sorry.” “We’ll get through this.” Cold comfort. I can’t give him back his dreams of flying. From here, I can’t even help him find new dreams.

It’s like we live at the bottom of a well. The rope that lowers the pail just broke. Trapped, we wait. We'll think of something, right?

Another Ribbon Confirmed, self empathy, and new beginnings.

It's been ten years since my first diagnosis. Well, 10 years and three months. Between here and there, the time is endless. My siblings put together a crazy plan to take D and me on a ten day trip somewhere. This has meant tracking down passports, arranging doggy baby sitting, and planning a once in the life time trip. As part of it, they asked me to find pictures of us. 

This is a normal request. Like most couples, we have an endless number of selfies and couple photos. You know the ones. D and me kissing on a bridge. D and me hugging on a beach. D and me and the dogs packing for an adventure. 

I dutifully went back ten years...pulling up pictures of an old me and an old him living our old lives. Me bald. Me fat. Me thin. Me with long hair. Me with short hair. Me bald. D not changing. His arms wrapped around me. His eyes soft and sweet. His laugh frozen on his lips. 

And then they stop. 

5 years ago, it's like someone came through with an exacto knife and sliced him out of my outward life. That is when this started. This being the start of the end of life as we knew it then. Multiple Sclerosis silently stole in through our window and silently snuck back out with my husband's, my best friend's, my love's energy and vitality. 

He sleeps most of the time now. We're working with doctors. We're going to support groups. It's summer. We can start building back up what we have lost and given up. Back home in Austin, our family and friends lift us up and shelter us without asking. He can't work, but gratefully, his disability kicks in this month. It's not a lot...but it definitely helps. 

There's this great video where Brene Brown talks about Empthy. I may have posted it before. It's beautifully illustrated with a bear, a cat/fox thing, and a goat. Anyway, in it. she talks about how empathetic statements rarely begin with "at least." 

She says empathy is a matter of meeting someone where they are at, being vulnerable with them, and sharing that emotional experience with them. This video changed my life in my relationship with others. 

Today, in a fit of rage and fear spilling out of me, in my head I said, "At least, he isn't dead. There are people who are dead you know." 

It stopped my mental storm cold. How can I be empathetic with others. if I can't be empathetic with myself. So I got into my head, and I turned into that giant bear, and I swept my little fox/cat/coyote self into my arms, and I said, "thank you for sharing with me, self. This is really hard."  

It didn't matter if the storm lifted. It didn't matter whether or not blue skies were up ahead. Even by myself, I am not alone. This is really hard, and there are lots of people surrounding us to make it a little better by just being here with us. 

PS D and I had the great fortune to be able to move home to Texas. I've been looking for work and found a job at the American Cancer Society. Per ACS social media policy, you will now see "The postings on this site are my own and do not necessarily represent the views of the

American Cancer Society” around my blog.

Three Letters: Vanessa, David, and Facebook

Dear Vanessa,

You don't know me at all. Maybe, at the beginning of the Scar Project, you saw my picture. Maybe, you stared into my eyes on the screen as I have stared into yours. Maybe, in the inhales in front of the camera, our breaths breathed the same recirculating air and our stories touched each for a moment.

I've watched you through David's lens. I've watched your strength turn to courage, your hope turn to defiance, your passion intenisfy as your cells careened out of control. I've watched your sisters blog about you and your last moments. Blog posts so infused with love that I could feel them holding you and you holding them.

You left us too soon. I never got to meet you in the flesh, I wish I had so that I could thank you enough for all that you have done.

Thank you for sharing your story with us. You embody hope. You show us that beating cancer isn't just about living longer, it's about living sincerely, and I thank you.

Thank you to your family. Their gift to me and others like me when they shared your story can never truly be repaid.

Good bye. You will so be missed.

Love and light, Amanda

Images used with gracious permission of 

David Jay at The Scar Project

Dear David,

I don't know if you remember me either. My shot didn't make the final cut, but you gave me something intangible.

Before the Scar Project, most of society couldn't look at us and see defiance and beauty. I don't think I did before I came to see you.  I think I bought into being maimed. I think I bought into being less than feminine for making a choice that I thought would save me.

Really,  your photos saved me. They made it so that I could be a person, a sister, and a woman, all feirceness and scars. When I sat for you, I wanted the daisies. They made me feel feminine. The photo you took reminded me that as a woman I am beyond what I think I am. It's like you reached into me and pulled me out from where I lay hidden.

When you posted it, each comment from each stranger, was a nail in the coffin of my self doubt and my fear of who I was to become. Even though, they were removed long ago, each electronic word is written deep inside me.

Thank you, much love and respect,

Amanda

Thank you.

Facebook:

I am tired of you CENSORING my sisters because they have nipples and I do not. I am tired of you blocking an art project that finds hope in defiance and beauty in scars.

You said you weren't going to do this anymore. You worded it though in a half truth way. Apparently mastectomy scars are OK, but god forbid, anyone should see a nipple.

I could handle it when you took down my photo, but taking down Vanessa's memorial was uncalled for. You took away the messages left in love for her family, and even though you put them back, you CAUSED distress that you cannot FIX.

Listen to us. LISTEN to me. Those pictures are the story of women like me: women diagnosed young and strong, battling an illness that no one can see, telling a story few know, and baring it all so that others like them DO NOT SUFFER IN SILENCE.

Please stop it, David, the rest of the scar girls, and the rest of the people these photos resonate with do not need this any more.


Respectfully,

Amanda

"I need help."

Thank you. Robot Hugs! Best advice ever.

Terror. My heart sunk into my shoes, my palms dripped anxiety, as my lungs stilled.  "I need to go to the hospital. I need you to take me. I am so sorry. I am so sorry." D's voice cracked and quaked. I grabbed my purse, my keys, shut my office door. "We got this baby. Together, we've got this."

My knees shook. I got D in the car. We raced to the emergency room. Back and forth, we talked and cried. "I am so sorry." "We've got this baby." "I am so sorry." "We've got this."  "I am so sorry." "This is the bottom, darling. This is the bottom." Once there, his breath eased, his body melted, and he relaxed. What he had been carrying on his shoulders alone became the burden of many.

We waited. The crisis worker interviewed us separately to ensure D didn't have an abusive wife at worst or at best, a wife who was the problem.  In that little room, when she asked me what I did, my eyes broke open and water streamed down my face. I smiled, "I'm a crisis worker."

I feel like she held my hand. I am certain she didn't. I probably looked like a psychological porcupine at a cross roads. "I'm surprised you're not in the room next to D, here for treatment." I chuckled. "It's my turn."  She smiled, "Just don't shovel your emotions and be strong for the sake of strength. It will hurt not to move." "D's wellness cannot be sacrificed for mine. There's always solutions."

In with D, talking with the crisis worker and the doctor, D, shuddered, "I know you need to go home and be with Duck, and I'm so sorry you can't. I am a horrible person." "We're staying here," I said evenly, clarity making everything hyper-focused and brilliant.  "There's no move." As I said it, I looked at the crisis worker. Our gazes met, and I did everything I could to tell her, "It's alright. I've got this."

In another room, a year before, when I talked to my sweet doctor, I told her D was having a hard time. She wondered why. She wondered how I could do better than he did. After all, I went through it, and he didn't. "I get it. If I die, I die, and I'm gone. If I die, he's here, and I'm not. I get it." She looked at me, "I've never thought about it that way." 

He has always been the strong one. The one who held me wracked in sobs at 2:00 am. the one who watched me bite my lip until bled to block out blinding pain of chemo side effects. The one who cleaned up Jackson Pollock vomit off the bathroom floor.

D and I've thought long and hard about telling this side of our story. We decided it needed to be told together. Mental health has lived in the shadows for too long.

D ended up diagnosed with PTSD from my cancer. Even though I sat in the chair, D lived through it with me. Each prick, each nausea wave, each incision, each waiting, he was there. D is a co-survivor of my trauma, and he, himself, is traumatized.

A reminder from a good friend.

His mental health crisis was as real as my cancer. He had no option to "just be happy" or "just buck up." He could only bend and ask for help.  The wicked thing about depression and other crises in the mind is that the last person to know it's a problem  is often the one who is suffering the most. They can't be cut out, they can't be irradiated, and they can't be poisoned, but they can be treated.

Mental health isn't a person's choice. It just is what it is, and there's good ways to treat it. D and I are both working through this together.

If you are struggling, your spouse, friends, and family are struggling with depression, PTSD, or another mental health issue, please don't feel alone. Mental health concerns are not a choice. Your choice is to recognize that you need help and do whatever you can to get it. It's not about being strong or not. It's about being wise enough to know you need someone's help.

At the bottom, we called D's brother, and he flew out and helped us both get on our meds. It was the best call I've ever made, and it was the best gift we've ever been given.

This post contains swear words and strong emotions

1 in 3 of us will develop cancer in our life times. Our bodies will try to kill ourselves in a process as ancient as life itself. A cell will divide and divide long past its sell by date, and we will sit in that room and wait, all nervous fingers and breath, for words that can't be taken back.

Fuck cancer. Fuck it. I fucking hate cancer. It's a thief that comes in the night to steal what is most precious. It steals what is sacred, loved, and cherished. I fucking hate cancer.

When I was a kid, my mom would correct us. Anytime we said, "I hate so and so." She'd say, "do you want them to die? If you don't, you don't hate them."  I didn't get that then. Now, I do. I want cancer to die a fast, quick death. I want to have that giant party that George Lucas threw at the end of the remastered episode VI.

It's been a rough and scary week, and I've welcomed too many people to the survivorship club. I'm sad they are joining, but I'm glad I'm here to give steady hugs and endless time to listen.

Most days, my cancers and I have an uneasy truce. They leave their echoes in my body, and I don't attack them ferociously with my mind. Shots were fired. The truce hangs by a thread.

Cancer is a force of nature. It's hard for me to stay mad at it for long. It's like a tornado, hurricane, or drought. It just is, and here I am standing in the desert, shaking my fist at the sky, screaming for rain until my throat aches from heat and air. 

So if you're reading this, and you know that full body betrayal, that cellular treason, you aren't alone. It's OK to be pissed off, and it's ok to scream and cry. Cancer fucking sucks, but it can't steal the you-ness of you. I'm going to tell you something that stills my racing heart and eases my knotted gut:  cancer can cause my death, but it can't kill my soul, my love, or my peace.

Know that you are so loved, no matter what happens.

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."

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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