It is done.

On Friday, April 28th I finished (what I hope is) my last round of chemotherapy.

I struggle to find the words that will fully explain what the last four and a half months have been like. What they have meant to me. What they signify.

I’m not exactly sure what to say which is more likely because I haven’t even begun to process the depth of trauma that has occurred.

The last few days have been so unbelievably hard and this last round of chemo destroyed me until eventually there was a light again. A twinkle. A glimmer of hope appearing in the distance, anchoring me back into reality.

In the darkest moments this past weekend, when fever crept in and a rash so dark and red, swelled my face and body so I felt unrecognizable, I kept telling myself it’s done in an effort to stay above the surface. This part is done now and I’m grateful for that.

As joy washed over me because of that very reason, I also realize how much grief and sadness sits in my chest too. That and the recognition that I am going to have to figure out how to navigate this in a way that doesn’t swallow me alive.

I will not lie. I feel a wave of horrible sadness and emotional pain that frightens me. I feel exhausted. I feel overwhelmed. I feel confused and numb. The last five months I have been in soldier mode just trying to get through the side effects of chemo all while trying to still work a bit here and there and stay as present in my life as I can.

I have so much to write. So much to say but the words still evade me and I’m left doing the delicate dance of processing while also moving on, moving forward.

I know my physical self will return. My hair will grow back, I’ll lose the ten plus pounds of chemo weight I gained, I will regain my strength, my stamina.

The hardest part, in my opinion, is lingering in the near distant future and can no longer be avoided by telling myself I’ll just deal with it once chemo is over. Navigating the emotional stuff.

Trying to figure out how to be in the world again. To deal with the aftermath of what I just went through and will continue to go through over the next few years with immunotherapy and scans and just, well, waiting to see what happens. This part is the hardest. This part hit me like a Mac truck last time, sideswiping me from out of nowhere, dragging me miles into the painful places I didn’t want to go.

I’d be lying if I said I didn’t feel like a big part of my life was just one of constant waiting. Waiting for cancer to sneak back into my life the way it does every few years, and, like a wrecking ball, leveling my world to the ground once more.

The constant stop-start of it all is so exhausting. The expectation to “put it all behind me now” weighs heavy on my shoulders because that part has never come easy to me.

I’ve talked about it before as feeling like I am standing in the middle of time square as the world rushes on around me. I feel like a fish out of water, trying to take in a deep breath of air only to realize I don’t know how now that I’m am above the murky, wet layers that have, in a way, kept me safe for the last few months.

The next step is to get scanned in three weeks and then from there, continue on with immunotherapy for two years but I already know I’ll have to take this treatment-by-treatment. I’m tired of feeling sick and I’m tired of feeling like a stranger in my own body. I’m tired of giving my time to sitting in a chair and then to being hit by the side effects a day later.

I want to live which is ironic because immunotherapy is the best chance of me doing that for the longer haul yet, I fantasize about quitting it all every single day. Ripping the knobby port out of my chest and never looking back.

I’m exhausted.

And scared.

Because as much as I hated every minute of treatment, there is a protective layer being in treatment brings with it.

A hope.

A comfort that this thing that is poisoning you, altering your appearance, your stamina, your whole life, is also poisoning the cancer. It makes you feel safe. Like for the time being you have tiny workers inside your body fighting on your behalf and now their job is done and you have to wait and see how well their work will hold up. You wonder and hope they laid a strong enough foundation.

And, only time will tell.

But history and time have shown me what happens.

When my tiny monster returns.

And those are the fears I must grapple with.

On my own.

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.

Death and Dying: The Stuff Nobody Wants to Talk About

I wake to a throbbing pain behind my left eye. It feels like something is pushing on my eyeball from behind and I roll out of bed, my body speaking a language only I can understand as I do so. I grab my Pendleton robe off the hook in the bathroom and wrap it around my cold, hairless body and head to my desk to find my glasses. Cold has taken on a new meaning over the last few weeks in a way I didn’t quite understand before I started treatment. Due to the side effects of the toxic drugs being pumped in my body I no longer have any body hair which added a protective layer I never really appreciated until now.

The irony that to kill the invisible cancer cells that are trying to take over my body and destroy me from the inside out, I must pump my body full of toxins that too are destroying me from the inside out is not lost on me.

Rubbing the sleep away from my eyes, I find my way to my desk in my main living room and open the top drawer. I pull out the Warby Parker case and pray that I remembered to put my glasses back there the last time I wore them whenever that was. Maybe if I wear these the throbbing will go away I think but I’d be lying if a part of me didn’t worry that maybe the throbbing was an indication of something more. I don’t often speak of the deeper fears like this one much out of the fear of being labeled dramatic or a hypochondriac so, like so many times before, I just push that thought down deep to rest with the other ones. I don’t want to think about all the maybes that cancer brings to the surface today.

There is always a more plausible excuse I remind myself. I’ve been numbing out watching a lot of TV lately without wearing my glasses. I’m literally going through chemotherapy right now which has a long list of side effects. Don’t jump to conclusions Amanda. This is a hard thing to do though because history has shown me that my body betrays me often and I’m not invisible to the cancers that take up home in my body.

I also know that sometimes bodies just ache and throb. Signs of aging. Reminders and indications that time is moving forward, not back, and I must adjust to the changes that are inevitable. We can do all the things to prevent visible signs of growing older but we all know this truth to be certain; our bodies are aging with each tick of the clock.

Tick tick tick.

One more grey hair. A new ache in my knee. A tiredness deep in my bones. A blurriness to my vision that wasn’t there yesterday. I smile at the naivety I had for year thinking that I was different and aging would not affect me.

In a few short months I’ll be turning forty-three and my thoughts rush to my bald head and how long it had taken me to grow my hair out since I had to cut it short the last time I went through cancer treatment. About ten months after I finished radiation the effects hit my body like a steam roller. The stress on my body and my spirit had created new lines on my face and my hair started breaking and falling out at a rapid rate. The events from the year before had taken a serious toll on my hormones and was triggered even more so from the sudden and traumatic death of my beloved dog Rocky.

I smile at the memory of Rocky as wiggle my toes to scratch the belly of the Baker, the pup I got two months after Rocky passes. I rub a hand over the light stubble that has already grown back since I shaved my head a few weeks ago. I figure by my birthday I’ll have a head full of it and a look that screams GI Jane. In about four years time, just maybe my hair will be long again.

I slide my glasses on my face and swear the dull ache behind my eye eased up just a bit when I do so. I find my way to the kitchen and start the hot water for my coffee. As it boils I feed Baker and grab my blue Carhart beanie and slide it on my head. This has become a daily staple, wearing some kind of beanie 24/7. I look forward to warmer weather where I can wonder about in all my bald glory or at least throw on a baseball cap instead.

One of the few pleasures and joys in my life I am 100% certain I will never, ever, ever give up is coffee. It’s the main motivating factor that gets me out of bed most mornings and especially on these colder ones, as I anticipate the vibrant life-force waking me up after eight hours of rest. When the water finishes boiling I pour it over the powdery substance at the bottom of my handmade tumbler a friend made. A medicinal mushroom coffee blend that claims certain health benefits too. I mean, I might as well try. I have nothing to lose at this point.

I stir the dairy-free creamer into my coffee and walk back towards my bedroom, crawling back in bed. I pull the covers around tightly knowing well that in a few moments I’ll be ripping them off in a sweaty fit due to one of the many hot flashes I get daily. I’m still not sure if these are related to chemotherapy or the fact that I had to go off my hormone therapy due to my type of cancer.

I glance at the clock on the bedside table which I got with the hopes of not sleeping with my phone in my room and it reads 4:25 AM which is a new normal for me since I can barely stay up past 8 PM these days. A 4 AM wake time isn’t so strange I guess. It is eight hours affterall.

I take the first sip of my coffee, another joy in life that is hard to describe but known well by a particular club of people. I allow the coffee to dance on my tongue singling to my body it’s time to wake up. I settle in on the other feeling that has been consuming me the last few days. A thick layer of meloncoly probably brought on more so by the cold and dreary weather but also the question that has been lingering just below the surface for a few weeks now.

I think about my conversation with my oncologist from the day before and the courage it took to ask the question no one wants to think about.

What if this doesn’t work?

My biggest model on this journey, my mom, has had cancer four times and is still here so naturally I just assume my story will mimic hers. I’m also not naive to the reality that it could be written entirely different. That my final chapter could end sooner than hers.

As much as nobody wants to think or speak about death and dying, it’s been on my mind lately. What if this doesn’t work? The small aches and pains that have returned to my pelvis are a near daily reminder that chemotherapy is powerful but so is cancer. I like to think that the pains and aches are the cells dying but can’t help but wonder if it’s an indication that I may not be one of the lucky ones. What if at the end of these six cycles I’m scanned and they see a new mass? What if I finish chemotherapy and the scans indicate no evidence of disease but a few months later I wake on a random summer day and feel that familiar pressure and pain once more?

What if my hair has grown back and life has returned to “normal” and my bones start to ache and the fatigue hits me harder and my bloodwork indicates skewed markers?

Nobody wants to speak of death and dying but death and dying are not a what if. Death and dying are an inevitable and the reality is, I’m young, but I’m not invincible.

I’m not too young or too talented or too full of life for death to evade me. I don’t have too much stuff left to do or so much love left to share with the world. Death and dying doesn’t care about any of that. When it’s your time, it’s your time. I think the hardest part of that reality is not ever knowing when that time may be or how.

But nobody wants to talk about death and dying even though it’s as natural of a part of life as being born is.

I think it’s human nature to want to stay in the fluffier parts of life. To only think about tomorrow and the next day but I’ve never really been afraid of talking about the darker stuff that comes with being human. There has always been a part of me that has known that it’s just that, a part of life.

Maybe it took watching my step dad die last year but it really solidified something for me. Death is ugly but it also has a certain beauty to it. A sanctity.

But let’s not talk about it though. It’s too scary. Our finality is scary. It can feel overwhelming. The idea of not being here anymore is something that so many can’t even bring themselves to think of.

It reminds me of a time I was out to dinner with some friends while I was back in Seattle visiting I still lived in Encinitas and had finished radiation but I can’t remember what season it was. Someone had asked me a question that somehow led to the topic of death. Leave it to me to find the way to the uncomfortable topic.

“I’m not afraid of dying.” I said. “Once I’m gone, I’m gone.” The others huffed and puffed, one saying “I can’t even go there!” while another said “I can’t even begin to think about it.” The others following suit. I couldn’t tell if I was envious of their privilege or annoyed with it. There were two ways of looking at it. Lucky are those who have never been faced with their mortality. Or, lucky are those that have. I still wasn’t certain how I felt about it.

But it’s true. I’ve never been scared of dying. I’ve been more scared of not figuring out how the hell to live fully and deeply. I’ve always thought that once you are dead you are, well, dead. You’re gone. Where you go I’m not certain. I’m not a religious person so I’m not sure if I believe in a Heaven but I’d like to think that wherever we do go we are reunited with our loved ones that have gone before us. Our beloved pets too. Lord knows if that is true, I’ve got a lot of cats, a few dogs and one furry rodent I named MC Hamster waiting for me over the rainbow bridge. Don’t get me started on all the Goldfish I named Fred, assuming that their trip down the porcelain thrown landed them where I’ll one day be going.

And that thought brings a smile to my face. It softens the fear a bit. Imaging that at some point I’ll be running through a field of wildflowers with my boy Rocky and Oliver and Lucy and Sammy and Rusty and Boots and Blueberry. Yes, we had a cat named Blueberry.

Thinking about your own death doesn’t mean it will happen any sooner. It doesn’t mean you are being negative or dark or morbid. It means that you have accepted one of the truest parts of being human. That one day you too will die.

I think that getting curious about your own mortality is actually a catalyst to getting us to live more deeply because when you really think about what it means, you realize that one day it will all be over. Life. It will no longer exist.

So how does that make you feel? What does that make you want to do and say? How do you want to walk in the living so that you may make peace with your one day death?

May I suggest that you give a little thought to it before you end up on a doctors table asking, "what if it doesn’t work?”

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.

I Am No Super Human Void of Pain and Suffering

The last few days have been hard. I’ve been swept away by a lot of heavy feelings of grief as the reality of the next few months sets in.

Although I’m grateful I’ve had more energy the last week and the bone pain is gone, the fatigue I feel is something hard to explain. It’s deep in the layers of my skin, down to the bone. It’s hard to get a good flow doing much of anything and right now, my workdays look a bit like scattered dust blowing in the wind.

My hair is starting to fall out too. I’m lucky I have a lot of it but every time I get out of the shower and run a comb through it I’m met with having to say goodbye to a good handful of my identity.

Oh the weight gain and muscle loss. I’ve always been very active. I’ve climbed the tallest mountain in the lower 48 and finished 3rd in my age group in triathlons. Now I can barely recognize my body in the mirror and get winded walking up the stairs. It’s a hard adjustment. To look in the mirror and see a stranger at times.

I’m angry and sad. I find myself kicking and screaming inside that my life has to be paused in such an extreme way once again.

I was just getting back on track from my last cancer (6 years later) and from my hysterectomy two and a half years ago. I was finally able to grow my hair long. I found a way to move my body and was seeing older versions of her here and there. She was coming back alive.

I don’t go to this place often anymore because despite all of it, I’ve learned to find a lot of joy in the life that I now have.

But these feelings, This grief, it’s important too. And I’ll let it wash through me. And I’ll honor its purpose.

Because I’m human.

And cancer treatment is traumatic.

All of this is traumatic.

And I am no super human void of pain and suffering.

I am, grieving.