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.