Seriously, it's probably nothing.

How do I even write this? I guess I start at the beginning, give the middle some attention, and then craft an ending. Or maybe, I should start at the ending? This meandering story might make more sense then.

On Friday night, I had planned to be watching a dear friend stand up in a rayon leopard print blouse and perform as Falstaff. Instead, I will be face down with my "breasts" in an MRI Machine. It will chunk and whir, and I will listen to whatever they want to play in the room.

"You know this feels different than last year."

There's something comforting that I have a survivorship doctor who knows what I feel like, who can trace the hidden topography of my body with her hand, who can find out of place tissue like a farmer finding loose posts in a fence.

It's also scary. My body, the great betrayer, the self-killer. What happens when you become your own death?

Cancer never really leaves me. Both my cancers were fast-- designed to spread and grow and reproduce. They are cancers, and we don't understand cancer enough.

Cancer settled in my soul. A ghost. A memory. A thing that returns like a long lost evil twin in season 8.

Everything feels good and feels quiet. Life is getting back to normal. The memory faint ---

"You know this feels different than last year."

I'll keep you posted, as we all know, this is probably nothing more than lymph fluid and scar tissue.

Just remember to hug your loved ones. Remember to do all you can for a cause you care about.

Our lives are not guaranteed. They are finite and fickle. They end.

Maybe next weekend, I will get to see Falstaff.

And this really hurts

"The postings on this site are my own and do not necessarily represent the views of the

American Cancer Society”

A week before she died, I held Carol’s hand. I’ve written about her death before,

but today I’m thinking of her. My heart is in that room. My hand in her hand. It’s dry and cold and blue. Her breathing is harsh and labored, and her wish for me that I live is so clear in each minute we share.

I’m with her today because, in 2004, she went to a rural hospital in Southern Oregon with a distended belly and pain, and she was turned away after a cursory exam. She was told that they couldn’t cure fatness.

Because she didn’t have health insurance, she had no way to get a second opinion. The hospital was not allowed to run tests, and a year later, almost dead, they had to treat her. (This is your safety net people.) A year after that I held her hand, and a week later, she died.

CAROL DIED BECAUSE SHE COULDN’T AFFORD HEALTH INSURANCE. SHE DIED BECAUSE SHE HAD A PRE-EXISTING CONDITION.

To all our lawmakers who voted today, who removed health care from 24 million Americans, who shoved me back into a high-risk pool should I ever lose my job, who destroyed basic medical services, I hope you never have to hold your loved one’s hands as they die and know that if they had been born richer or had a different life, they would have lived at least a little while longer.

So the new act is going to the senate, and it won’t pass there, but these lawmakers must be held accountable. Please call, write, protest, shout, scream, resist. This is our country, and they work for us. Do it for me, and most of all, please do it for Carol.

Peace and love,

Amanda

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.

Another ribbon...

We're sitting in another doctor's exam room. Wan fluorescent lights flicker. My pulse quickens as I hear familiar words. Neuropathy, loss of balance, not cancer, fatigue, not cancer.

My hand cannot reach for his. I'm rooted to the chair...a chasm opening between me and the exam table. The neurologist takes D's history, and I am left, my breath screaming in my lungs and my pulse ramming in my veins.

It's weird being on the other side of things. It's weird to feel the helplessness. When it was me, when I was the one on the table, it was somehow both easier and harder. I took some comfort knowing even if I didn't make it, he would.

MRIs, spinal taps, 12 vials of blood, and the endless waiting. All of it so familiar and unfamiliar. The doctors' offices, the bills, the missed work. We are haunted by what we cannot name.

I get home from work, and our house feels empty. Our dogs quietly lick my fingers. The only thing I hear is the rhythmic sound of his breath whispering in a dark room.  How many times has it been my breath he listened to?

It's hard not to be angry right now. The "what a couple" jokes made privately sound hollow and pained from other mouths. I'm not mad at him. I'm mad at life.

So we wait, breath by breath. We wait, hoping/hating the answer that will likely come, to add another ribbon to our collection. What a pair we make. 

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

Aqua jogging

Last year, I wasn't entirely certain I had the strength to make it out of in the shape that I wanted to be in. Each denial letter from the insurance company eviscerated me.  I would sit at my desk in my old office in tears. I couldn't see a way forward. I, who always knows there're solutions, I, who always gets back up, stayed still and motionless trapped in a prison of pain and hopelessness.

Each denial letter reinforced this perception that my skills, my life, and my person-ness were not valued.  It didn't make sense. Every one who mattered said I need the machine. Without it, life stretched in front of me an endless struggle against a disability only a few trained people could see.

My mom's best friend, my aunt, once told me that I am an aqua jogger. "You get pulled under, and then you shoot right back up. You don't stay down long."  Last year, my lungs burned and my chest ached from being under the water too long.

I value resiliency. I value it in myself and in others. It is something that lets me say, "this isn't working. there has to be another way."

In November, I started meeting with some people about work. I remember sitting at lunch with one of them, and I remember saying, "I don't feel like this is a disability. I feel like it's a problem that needs solved."


Now, I see it as both. I haven't been able to pump for a week. I feel the heaviness creeping back. My hands won't hold pens easily, but it's different. I know it's temporary. I know, as soon as my cold is going, I can start pumping again, and the pressure and swelling will ease.

So it's a disability, but it's also something that can be supporting. Luckily, I've found an amazing place to work that seems to see it the same way.

"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.

Delayed

No snow!!! How can we snow shoe? How?

It's been a busy couple of weeks, and our busted laptop was moved away from my comfy blogging chair to the floor. I don't find this super conducive for writing my heart out, but alas, D's back won't allow him to fix the situation, and I can't move the stupid entertainment center to get at the plug. Amanda's blog, presented by dust bunnies, live from the guest room floor.

Yesterday, I parallel parked my new company's car. Yeah that's right, Amanda who would rather walk two miles into town than parallel park, parked that car between two giant trucks. Maybe it was just one giant truck and a fiat. Actually it was a prius and a fiat, but they were HUGE for their make and model...It's an omen.

In November, after receiving yet another denial letter from my insurance company about my machine, I sat defeated, hunched over my steering wheel, crying my eyes out. In my hand, I held a packet of papers one of my doctor's had graciously filled out for me to turn in. Across the top, the paper read, "Application for long term disability."

I couldn't drive. I couldn't walk. I couldn't type well. I couldn't hold a pen, tooth brush, comb, knitting needles, etc. I couldn't really do anything. I had ceded my power to the insurance company, and the remaining had been sucked away by a ridiculous finger infection. A lot will change in two months.

My machine came. With daily use, I am losing on average three pounds of fluid a day. I can walk. I have energy. I can hold a pencil. The disability paperwork is somewhere collecting dust.

Yesterday, I went to a resource fair for kids with disabilities transitioning to adulthood. As is often the case, someone commented on my sleeve.

Interested stranger: Burn garment?
Amanda: No, it's a compression sleeve

Interested stranger: Lyphedema?
Amanda: Why yes.

Interested stranger: I did that work and amputee work for twenty years.

What followed was a pleasant discussion of what has changed in the last few years since she left the field. She got it. She got what I was dealing with. She sympathized, and then she said something totally startling, "You and I both have disabilities, and no one would know it looking at us." She, M, has MS. I have total body swelling.

We have disabilities, we are not disabled by them. The distinction felt so crystal clear. It was like a weight lifted from me.

Today, I was discharged from OT for the first time in a year and a half. My pump is working so well, I don't have to go see my OT anymore except for tune ups. Now I just have to navigate the accommodations and the insurance. I see the end of it though. I see all I can accomplish.  The end is in sight.

Fish Lake in the SNOW!

The cleaver

The cleaver

I managed to find out about almost all of my Christmas presents from D this year before Christmas day. I didn't go out snooping. I love the surprise of it, but it just happened. The first one, I discovered as the amazon account is in my name: "Hey, That's my Fish!" shipped today!

D went on email duty until the rest of my presents arrived. He, unlike me, doesn't feel the need to make all the red numbers on my phone display disappear. When the note arrived for the last shipment, I gleefully deleted spam and swore at urgent missed missives.

A few weeks later, as I tidied the spare room, I found an amazon receipt. With dismay, I looked at it thinking, "How careless, Amanda, you left the receipt laying about." It was the receipt for my two gifts. I saw both gifts pre-Christmas...

The knife I want

The other gift? A cleaver. My old knives kept losing their edge The snick snick of the knife on vegetables dulled into a "scrinch scrinch." The knives would slide off whatever I cut. The cleaver was the closest shape that I prefer, a santoku, in the type of steel D wanted. "The cleaver is the only knife used in many other countries."

Unwrapped and in hand, I could feel the handle lacked enough girth for my neuropathic fingers, but D can make a new handle. The old knives packed off to the thrift store, I set about learning the new one. 

It slides left when I slice. I can't get my hand closed around it with enough pressure to keep it moving the direction I want.

A few days after Christmas, the sneezes arrived. By Sunday, D and I huddled together under blankets sneezing and whining. By Monday, one of us had to make soup. I started cutting the garlic. I sliced half of an onion. I turned to slice the other half, and the cleaver pulled left out of my hand and slipped neatly beneath the skin of my left ring finger.

Blood actually spurted. I actually howled. I haven't felt pain in my fingers for 8 years. D tried to get me to put

it under cold water, I, thinking he thought I had burned myself, hollered "Wrong solution." I grabbed a towel and applied pressure. D looked at the finger: "We need to go to the ER."

"NO ER. NO ER." gasp, sob.  "DON'T TAKE ME." gasp, sob. "DON'T," gasp sob,"TAKE ME. I," gasp sob, "CAN'T.," gasp, sob, "GO."

The ER is worse than bleeding. The ER is the place I go when nothing else works. The ER is where I find out bad news. The ER is no good. The ER is where I blow thousands of dollars at a time. Stupid cancer. Me bleeding and not healing is better than going to the ER sick and wounded.

After D swore he wouldn't take me and the bleeding slowed, he cleaned it, super glued it, and bandaged it. He then cleaned up the blood in the kitchen. I couldn't explain why the knife slipped. I still really can't. I think everyone thought it was too sharp, too big, or too something and that is just not it.

I'm not careless. I just don't have a great grip. When I hold onto small things too long my fingers and hand feel like they've been jammed by a basketball and eventually my muscles let go, and my hand stays in a neutral position. It drives me bonkers. I drop things all the time. In this case, I dropped the moving knife on my slightly extended left ring finger.

It and I are on the mend. I think, more than my finger, my heart hurt from the thought of the ER doors looming. It was a shock to feel that stab of emotional pain burst through the very real and blood drenched physical pain. I think I'm past it all and then it comes: grief, fear, and pain wrapped in a tidy little packet.  Will it always be my shadow?

D and I talked through all this on a hike. When I showed him the hand position that is the only one that never hurts, he said, "That's the neutral position. That's what it  does when you are floating in water." In that one phrase, I felt my grief lift. My hand is floating in water all the time. It's always relaxed. I only need to reach for it with my mind to remember to breathe. It's not broken. It's just sleeping.

P.S. A very sweet friend of mine said good bye to her sister this week. Please send her warm and loving thoughts and prayers. Heaven has another angel, and here she is greatly missed.

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