Cancer is a Not “gift” and god doesn’t give us more then we can handle.

I feel it start to bubble up. The envy I feel as others are out there living their lives while I sit back and watch from my little handheld screen, wrapped in the false comfort of the big, fuzzy blanket on my couch, I watch on as other’s share their luxurious lives and their hard work paid off and I can’t help but wonder why that is not me. That’s not to dismiss their hard work to get them where they are. Deep down inside I know that.

These feelings though, they are normal and messy and complicated. I’m okay with going to these places because I know once I do, once I feel it, it passes through me and my optimism comes swirling back.

I look out the window at the dark grey February sky and smile when a conversation I once had with my older brother slips into memory.

“I really want to roll my eyes at people who say cancer is a gift.” I say to him.

Sitting side-by-side somewhere doing something that I can’t remember any longer, probably watching the kids play in the grass on a warm summer day. The outline of our bodies is all my memory can see, the other details long gone.

“It’s so stupid. I mean, if cancer is a gift I hope they put in the return slip because this is one gift I would happily exchange for a life with just a bit more ease.” I continue.

He laughs and I laugh and without words, we agreed. He’s had cancer too. He gets it.

I would quite happily give all this back in a heartbeat for a path that was just a bit easier and although I have found purpose in it, I don’t think it was given to me by some higher power to test my abilities and strength. I think there are other ways I could have learned these lessons and wisdom or whatever I’ve learned from all this bull…lonie.”

I’m not bitter though, just realistic. I don’t cover my experiences with toxic positivity. Cancer, my friends, is not a gift and the God I may believe in doesn’t give you something like this to test you. She doesn't give you things because she thinks you are tough enough to rise above and handle it.

My focus returns to the dark grey sky and the little screen in my hand as I sink into my voyeuristic reality as I struggle with weakness and nausea wondering if this will just be a Netflix and couch day...again.

TOXIC POSITIVITY AND OTHER BULLSHIT

I used to feel really guilty that I never totally got on board with believing stupid sayings like ‘cancer is a gift’ and ‘God doesn’t give you more than you can handle,’ and ‘hey, you have to stay positive!” I also felt really guilty at my quiet distain for all the ribbons and runs. Cancer is SO much more then colorful ribbons and runs.

It’s easy to wear a ribbon.

It’s easy to run or walk a race.

It’s easy to throw a few bucks at a foundation every month.

What’s not easy, is truly showing up for someone going through cancer.

I know the ribbons and runs are a way of saying “hey, I don’t know what to do but this feels safe and like I’m doing something." And you are. I know that.

However, for someone going through cancer and having your life drastically change in the blink of an eye is one of the hardest things to go through and we need help and support and love, not ribbons and runs.

It’s terribly hard trying to continue some semblance of a ‘normal’ life when your factoring in chemo, blood draws, naps, and oncology appointments and wondering whether or not you will feel well enough to even leave the house at all this week.

What’s not easy is canceling plans after plans you are dying to make because you can barely peel your almost lifeless body off the couch.

What’s not easy is dealing with insurance that is denying your immunotherapy because THEY don’t deem it necessary and medical bills and just, life bills for that matter. All with a body that is just f&*king tired all the time and a mind that has been hijacked by toxic drugs leaving you with two working brain cells that are constantly in rotation trying to still be normal.

What’s not easy is accepting that the dust has settled when everyone has gone back to their own lives after the initial few weeks are over. When the donations stop and run out. When the dinners dropped at your doorstep no longer exist. When the phone calls and texts are few and far between. When you have to sit back and watch everyone living normal lives and you are putting your last bit of energy into just trying to live. And make a peanut butter and jelly sandwich.

And most of all, what’s not easy is dealing with the complex feelings and emotions that come with all of this in a world that constantly feelings like it’s yelling at you to stay positive! You are so strong! You are a warrior! You are a fighter!

I’ve written about this before in a few places but bloody hell, we need to stop telling people to stay positive when they are going through something like cancer because honestly, what it feels like is saying these things is more for you then me.

We need to understand why it is we feel like we need others’ to pretend they are feeling anything other than what that are feeling when they are going through some kind of life struggle. Or anything at all.

We are an era that is obsessed with being happy. Happiness is a billion dollar industry filled with chasing magic rainbows looking for the pot of gold that, I hate to break it to you, doesn’t exist.

What if instead of filling our time with chasing this elusive pot of gold we just accept that we are human and with that comes complex and often unpleasant feelings. Sometimes they last for mere seconds and others days or months. What if we accept that it’s okay to not be okay every damn minute of every damn day.

What if we stop asking ‘how are you’ when we really don’t want the real answer?

I get it. The pot of gold is very enticing. I too have a bookshelf laden with self-help and crystals and a repertoire of workshops and half finished classes and a closet full of attempts to find this pot of gold.

What if we realize we just can’t be happy all the time and there are definitely times when we should not be forced into it?

WHAT TO SAY INSTEAD

It’s hard being vulnerable. It brings a lot of discomfort and awkwardness and nobody likes this feeling. I get it.

It’s easier to just say, how are you? Knowing that you will more than likely get an auto response. “Oh I’m ok. How are you?

The only way to really grow though this, in my humble opinion, is to dive into that discomfort a bit. Really learn to be ok with the truth.

Watching someone you love or care about or even just know go through cancer is VERY uncomfortable.

AND…Going through cancer is VERY uncomfortable.

But these are some ideas of what you can do to offer yourself and help just a bit more. We just want a bit of normalcy and to be able to feel how we feel.

Ask real questions

Instead of how are you doing, maybe say, how are you feeling these days? (and then REALLY listen. Just listen. Don’t try to fix.) Or say, what has this experience been like for you so far? Or, what can I do for you? But then follow up with some ideas because we will go into auto-pilot again and say “oh nothing, I’m fine.

Invite us to do things

We may not be able to go or have to leave early or cancel last minute but the the invitation makes us feel normal. DON’T STOP INVITING US but give us a lot of grace. Every minute, every hour, ever day, every week is so different for us going through cancer.

Tell us about your life and what’s going on

Personally, hearing about the things my friends are doing makes me happy. Hearing about their struggles gives me an opportunity to support them back. Sometimes it gets really old living in your cancer world. Just be discerning about what you share. I know that my friends experiences are true for them. I know that what they are going through is their struggle and I can’t fault them that it isn’t cancer. As a person going through cancer, figure out what your boundaries are around this but I personally feel like we still need to be good friends too and a friendship is a two way street.

Let us talk about ALL of our experience

I have a rare cancer. Although it was small and my surgeon was able to get it all in surgery, we don’t know if microscopic cells have already spread. It’s terrifying. I confront the fact that this could go south at any point often. I have a high recurrence rate. I’ve had cancer before. I have a genetic mutations with very high statistics. I’m not naive that this could change the course at any time. So, I talk about it. I talk about death and what I want if this were to go in that direction. However, I’m often met with “oh don’t talk about that! That’s not going to happen!

Here is the thing, death is a normal part of the living experience. We are all going to die one day and for me, it will probably be due to complications with cancer. I’ve accepted that. One of the most toxic things we can do is act as if it will not happen to us or dismiss those in our lives going through this when they need to talk about it.

Different ways to continue to support

Clean their home or pay to have their home cleaned
Offer to walk their dog if they have one
Offer to come over and just sit with them, watch a movie, read, etc.
Bring them dinner on a set date (make sure you know what they like)
Order some groceries for them (make sure you know what they like)
Send texts saying “Just thinking of you” or “Remember that time we did…? Give them a reason to laugh and don’t expect a response
Think of soothing gifts they can find comfort in - Here are some ideas
Send gift cards (door dash, massages, their favorite grocery store…)
Talk them on a fun but easy going adventure
Send them an email telling them how much they mean to you or how they have inspired you (believe me, we do not feel very inspiring)

I think the overall point of this is to offer yourself up and get a little uncomfortable in order to help someone you care for who is going through something unbelievably hard.

If you feel yourself pulling away from those in your life because they are going through something challenging, ask yourself why. Get curious about your discomfort and then take baby steps to move towards it.

Those of us going through this thing called cancer often feel like we are on an island, floating all alone in some foreign land where nobody speaks our language and we are just to tired to even try. We truly just want to feel normal during an experience that is anything but.

We are scared of coming across as too needy.

We are scared of speaking our truth, not because we don’t want it “to become our reality” but because others will brush it off with some toxic positivity and dismiss what we feel.

We have the world sitting on our shoulders right now. That’s not to say you don’t as well with whatever you may be going through. Maybe all you can do right now is send a little text saying “hey, just thinking about you and miss you.” Believe me, it means the world.

In a world where it seems like cancer is just becoming a normal in many people’s lives believe me, it is anything but normal.

Our hole lives change over night.

Be okay with that.

And show up for it.

xo, amanda

If you would like to help me on my cancer journey, it is far from over. Here is my Cancer Support Registry. Also, encourage those in your life going through cancer to create one too.

Chemo, Covid, and No Eyebrows. Oh My!

It’s 2:30 a.m. and I’m wide awake. I guess that is what happens when you go to bed at 7 p.m.

My dog, Baker is curled up beside me. His heavy breathing tells me he isn’t budging. When I woke he was sleeping half on me per usual. His head and half of his body weight were resting on my back as I laid pressed to the edge of the bed. This is normal though. Part of our nightly routine. I wake, have an internal debate on how uncomfortable I am and determine whether or not I muster up the energy to push him off of me and over to the other side. He’s pretty damn cute though so it’s a hard decision to make.

I know he is just trying to protect me. My own little alarm system. Already a very protective and attached dog, when I had surgery and even more so when I started treatment, his protective instincts reached an all time high. Nobody gets past him, not even my mom when she comes down to my place. He stands on guard, barking and jumping up and down in front of me as if to say, “try me mother ‘f&$ker! Try and get to my mommy!” That is, until she pulls out a some kind chewy treat and his defensive demeanor melts into a puddle in front of me on the floor. Thanks buddy.

It’s day five in this chemo cycle, the third cycle of six, and yesterday I tested positive for Covid. Let me tell you, I’m feeling pretty darn great right now. This coupled with my bald head and almost non existent eyebrows, well, I’m ready kick ass and take names. (I know, I hate that expression too but it was the only one I could think of right now with the two brain cells I have at the moment). As long as I can do all this ass kicking and name taking from the comfort of my paisley sheets, wrapped up in a mix of my dog and my duvet.

I’ve had a cough and stuffed up nose for a couple of weeks now but I just figured it was due to the side effects of treatment and my non existant immune system so I just watched it and told my oconologist at our visit two days before this last chemo cycle. I already mask up wherever I go so I feel good about that.

Let me just say though, the level of vulnerability you feel when you test positive for Covid when you literally have next to no immune system is something I’d rather not experience. Alas, here I am.

Yesterday, Monday was the worse. I woke about 5 a.m. extremely nauseas which I think is more a side effect from chemo and the fact that I never woke up in the middle of the night to take another anti-nausea pill. I found myself hugging the porcelain throne, dry heaving, sweating and alone. Another new low. This was the first time my nausea had reached this level. I’ve been lucky being able to manage it with the medications my doctor prescribed at the beginning of chemo.

I thought maybe I would be spending my morning curled up on the linoleum floor but I managed to find my way to the kitchen, feed Baker and Louie who were both eagerly bouncing up and down signaling to me that they really didn’t care what I was going through, they were hungry and their needs come first. Blissfully unaware of the fact that I was mere moments away from losing whatever remained of my dinner from the night before.

After choking down my anti-nausea pill, my pill for nerve pain and something else I’m taking for some other kind of bodily discomfort, I found my way back to bed and fell asleep for a few more hours.

I woke moments before my phone started ringing and I realized my mom was calling me. From upstairs. Something we both are guilty of doing because neither one of us are able to climb the stairs that separate our two places easily these days.

Apparently, I had also managed to send her a text before I fell back to sleep. “I’m not doing good” was all it said. I picked up the phone, “Honey I have the flu.” Selfishly my first thought was great, my caretaker also needs a friggin’ caretaker. I hung up the phone and slipped dipper into the depths of my uncomfortable vulnerability and aloneness.

I still had hope though. I could call someone and they could come help me if needed. That was, until my mom called back a short while later. “Honey, I have Covid.”

“F&%k!!!!” I screamed in my head.

"Great. I better test too.” Was all I could actually get out.

In the three years that Covid has been in our lives I have never tested positive. There have been several times when I swear I should have but no matter how many times I tested, every one came back negative. Until yesterday. Those two red lines appeared quicker then I’m comfortable with and I thought about how ironic it was that I always hoped one day I would stare down at two red lines on a little test but these are not exactly these ones I was hoping for. Staring back at me, I mumbled, “well, I’m definitely not pregnant so I must have Covid too.”

You know that vulnerability I felt earlier, well, that has now reached a level I never knew was possible.

Covid and chemo. Not the best companions I would say.

Then, this morning, I looked in the mirror and saw that now, I almost, have no eyebrows. That coupled with no hair, I realized I’m starting to resemble a naked mole rat.

And I sigh.

Three more to go. I can do this.

Going, Going, Gone.

When I was younger I loathed my hair. Curly and wild with a mind of its own, I would sit looking at myself in the mirror and grow angry over the fact that I felt so different from my peers around me. Me with my corkscrew curls and them with their bone straight and manageable locks.

All I wanted, more than anything, was just to blend in. My hair though, my hair made me stand out.

My mom would constantly wipe away my tears and promise me that one day, one day you will love your hair Mandy. Woman pay hundreds of dollars just to have hair like yours.

I’d roll my eyes and think, no. I want straight hair.

In high school I’d wake at 5AM daily to spend an hour plus blowing my locks straight then ironing them out with the latest hot tool that came with the hope of fitting in.

At some point in my senior year of high school I surrendered to what I was born with. I was tired. Tired of fighting it and tired of spending so much time on attemping to alter it to look like everyone else.

Over the years I’d learn that my mom was right about this too. I did learn to not only love my hair but became so deeply grateful for the individuality that came with each twist and coil and the wildness I felt looking in the mirror.

My hair became one of my favorite physical attributes.

I grew it long and stopped using so many hair products to try and control it into place and allowed it to be wild and free. I allowed it to live untamed and soon realized that it was as if allowing my hair the freedom to be itself allowed me to as well.

When I was diagnosed with cancer back in November and after waking from surgery to learn that I would have to do chemotherapy, my first questions was, ‘will I lose my hair?’

Originally the plan was to do a chemo combo that would preserve my hair. Maybe it would thin out a little bit but would still allow me to walk throughout the world with a little dignity in tacked and animinity on days I didn’t want the world to know.

However, plans changed and although I was still given the choice, I knew in that moment the only choice I really had. And it came with losing the very thing that made me feel the most like me.

Despite my best efforts at keeping as much hair as I possibly could with cold capping, exactly fourteen days after my first chemo infusion I woke and ran my fingers through my hair and with it came a handful of curls. I knew at this rate my hope of keeping at least fifty percent of my hair was going to fade fast and I wondered what was I really holding onto anyways?

By mid-morning on Friday so much of my hair had come out that I sent a text to my friend who is a hairdresser and asked if she could cut it short. A few hours later I was sitting in her chair watching her cut my long locks into a cute bob.

A moment I thought was going to be sad turned out to feel…fine. I felt nothing but excitement when I realized my new do was actually really cute. I can do this I thought.

But the hope of this slowing down the hair loss began to dwindle by Sunday morning when so much hair had fallen out that I started to get bald patched peppered throughout and the joke I shared with my family and oncologist started to become a reality.

“If I start to look like Gollum from Lord of the Rings, I’ll know it’s time to just shave my head.”

By Sunday afternoon I looked in the mirror and knew.

I was already going to my younger brother’s house for dinner and I Facetimed him.

“Do you have clippers?”

“Why?”

“Cause I’m starting to look like Gollum. We are shaving my head.”

At first he wasn’t on board. All he could see what a decent amount of hair remaining but I flipped it over to the side to reveal what was hidden beneath my carefully placed strands.

“I can’t do this. I can’t walk around with bald patches.”

I thought I would cry. I thought I would stare at myself in the mirror as locks fell to the ground and feel as if a part of me was dying but the truth is, I didn’t.

Instead, I laughed.

As I shaved the first bit off on the side of my head I was met with a rush of adrenaline a joyful giggles. I was surprised to see that instead of sadness, I felt free.

We shaped my hair into different styles from mullet to mohawk and resided on leaving a bit on top just for fun. I mean, I’m probably never going to shave my head again, I might as well have a bit of fun with it.

By the next morning even that was starting to come out in droves and Monday afternoon I decided to say goodbye to the last strands and shave my head completely.

And for the first time in my life I have nothing to hide behind.

And that feels utterly liberating.

And absolutely freeing.

This Too Shall Pass

On Friday, January 13th, I began a journey I would never wish on anyone. I had my first infusion of chemotherapy and immunotherapy. This week, to put it bluntly, I’ve been a little worse for wear.

It’s funny, I had these grand delusions that I would be back up and working in just a few days. I can do this I thought. I’ve been to hell and back before and I always bounce back quickly. I will with this too.

This beast however, is one I have yet to experience before. This beast, has annihilated me, leaving me question so much already.

I’ve been dealing with neuropathy that is so painful I don’t quite have the words to describe it other than feeling as if my nerves are being ripped apart by electrical shocks and waves every few seconds. This began Sunday evening and has yet to leave. And that alone is terrifying. To think of a life riddled with this kind of pain.

I hear the second week is better though and the third well, I welcome that with open arms as it teases me with thoughts of being “almost normal” again. Yet, I know when I finally make it to week three the clock starts ticking again until I’m sitting in that same chair, in that same cancer center, getting those same drugs pumped throughout my body. Round two.

And the cycle begins all over again.

I’m doing my best to hold on to little moments of joy, although few and far between, and my mantra, although hard to fully believe, this too shall pass.

This too shall pass.

And I pray that it does and that this time next year I’m pain (and cancer) free.

I hope the rumors are true though and next week I’ll feel better and the following more like myself and I can get back to work in whatever way that may look like for the foreseeable future. I miss my craft. I miss creating and putting my thoughts into action. I miss the chatter of a podcast playing in the background while I get lost in my shop.

I think one of the most uncomfortable parts of all this is the not knowing. Not knowing when life will feel normal again. Not knowing if or when I can work again. Not knowing if this pain will subside enough for me to do the things I love dearly. The things that make me who I am.

All I can do is the very thing I’ve been trying to figure out how to do my whole life. Surrender.

Surrender, surrender, surrender.

And wait.

And just be.

And that, my friends, is an art in and of itself and I haven’t really learned that medium yet. But like with all my other artistic paths, practice makes me better and better. So, I’ll practice this too.

And eventually, this too shall pass.

xo, amanda

P.S. - Ongoing help is probably going to be vital until I figure out my new flow with work. I’m so grateful to you and to all who have supported me in the various ways laid out in my Cancer Gift Registry. It’s truly lifted me up and made me feel so loved.

You can find that registry here.

The Stories That Lie Just Beneath

Sometimes I stand staring at my naked body in the mirror running my fingers along the scars that scatter my stomach as if they were braille and I was trying to read the stories that live buried deep beneath them.

I try and remember the intimate details of memories from a long time ago. All that comes to mind are vague and scattered ones. Only bits and pieces, sounds, and smells.

The beeping of the machine that connected the pic line into my inner bicep that pumped the three different liquids into me fighting to keep the infection at bay and keep me alive. I remember the day the technician came into my room to insert the pic line and how while she was inserting the line up my arm she told me that if the line went the wrong direction she could blow out my eardrum and how I started crying and demanded that she stop and asked if there was another way and how they wheeled me down somewhere else to finish what she started.

I remember another procedure in a cold room in the basement of the hospital a week after my first surgery when they asked me to lie on my stomach and how I looked at them as if they were crazy and around the room realizing I was all alone and had nobody to defend for me. I sobbed because I was so scared of the pain. My stomach had been cut open and they were asking me to lie flat on it and I still could barely even walk by myself. They gave me valium to calm me down as they inserted the plastic tube into my left butt cheek and deep into my pelvis to help drain the infection that was trying to kill me.

Then the muffled voices of doctors and nurses shuffling around the hallway. I remember Chris the Charge Nurse and how I loved her and everyone that worked on the Swedish seven southwest surgical floor.

I remember watching my mom sob uncontrollably at the end of the hall as they wheeled me back for emergency surgery right after my surgeon told us he was going to have to give me a temporary ileostomy bag. She sobbed for me because she knew my biggest fear was coming true but I was too sick to care. She cared enough for both of us and that image of her crying as she watched me roll away is burned into my mind.

And the mixed smells of sterilization and illness that wafted throughout the halls and the taste that filled my mouth as they injected certain drugs into my line.

I remember waking up in my room from the first surgery, eyes fluttering open, head still foggy from anesthesia and pain meds. The pain I’ll never forget. The excruciating pain and staring up at my older brother looking down at me with his big hopeful smile as I whispered, “Am I going die?”

I trace the smooth six-inch reminder of this time knowing these memories will never go away. These memories will always be there teasing me with the complicated emotions that come from a trauma like this. That one time when someone else’s mistake cost me something great and how what I didn’t know then was that I’d never be able to have children because of it.

There are other memories too. Ones that make me smile. Like how if it wasn’t for that time in my life my older brother would have never met his wife and I wouldn’t have my niece and nephews. She was the nurse that happened to be in the hall when my mom rushed to find help as I stood sobbing naked in the bathroom after the seal broke on my temporary ileostomy bag and everything starting leaking down my leg to the ground below. I remember the door opened and she was backlit by the sunlight and I couldn’t see her face, I could only hear her sweet, comforting voice and somehow I just knew she’d be in my life forever.

Or how every night my dad would come into my hospital room and curl up on the reclining chair next to my bed and we’d watch a documentary about the Green River Killer or the latest on the aftermath of the Tsunami in Thailand until we both fell asleep and how the nurses never asked him to leave. In the middle of the night, I’d have to pee and he’d jump up and we’d fall into habit, helping me put on my socks with the sticky grips on the bottom and unplugging and untangling the cords from the wall from my machine as he slowly pulled me up from the bed.

I remember this one time I needed to feel the January sun on my face so he and I snuck out a back door of the hospital and into a concrete garden and stood there, hand wrapped tightly around the machine pumping different liquids into me as I closed my eyes and felt the sun for the first time in days.

And how after work my older brother would come to sit beside my bed and read the writings of C.S. Lewis to me as I drifting in and out of sleep. I don’t remember a single word but I do remember thinking how his love for God would be enough for both of us.

Then this one time I was sitting on the edge of my hospital bed crying about something I can’t remember what. My mom stood in front of me trying to help me get up. She was growing impatient and I was feeling sorry for myself. I don’t remember why but suddenly we looked at each other and both started laughing and it hurt my stomach so bad but I didn’t care because it felt so good to feel joy for that brief moment. That’s my mom and I for you with our secret language and understanding and perfect timing.

And then there was the day I went from bad to good. From sick to healing. From walking a thin line to turning the corner. I remember it as if it were yesterday. It was day seven. I woke up and felt better. I felt the life come back to my cheeks and I ate real food for the first time in a week and saw hope for the first time too. My surgeon came into my room and said he could take out the drain in my butt cheek that had become almost unbearable at that point because of where it was and he said, “okay, count to three.” I was so scared it was going to hurt but by three he had already taken it out and I felt nothing but a relief I had been desperate to feel for a week.

I went home two days later but that is a story for another time because those are the stories from only two of the nine scars on my stomach.

Most days I just see the scars that scatter my belly but sometimes, these are the memories that come rushing back when I look at my stomach as I think about how scars are these crazy visual reminders of stories from our lives and nobody ever knows until you open your mouth to tell them.