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?”

Grief Is Not Something You Get Over but Rather Something You Learn to Carry More Gracefully

“You can still grieve and hold space for joy.”

The Before

I sit curled up on my bed in my cool basement apartment and the noise from the busy street outside echoes in my open window. It’s late afternoon and warm outside and my skin is hot and a new golden brown from spending so much time outside walking Baker. Today I took him to a park and practiced presence while proudly watching him explore the cold lapping waters edge at a nearby park. The joy stretched across his face was infectious and those final hours make what I’m about to endure worth it.

I still want to be outside soaking in the last few rays, watching my puppy discover new things but I’m tired. So very tired. I realize it’s the grief washing over me as I count down the hours until I begin prepping for my surgery. Today is Sunday, Tuesday is the day.

I wipe away the tears as I think about what this surgery means and how many times various doctors over the last sixteen years have hinted I should start to consider having it. Like a broken record each time, I wipe away their concerns with a well-practiced response, “Forty. I’ll decide when I turn forty.” My throat hurts from crying but I can’t stop. I must let myself feel the sadness wash over me as I finally close this very long chapter. This at times, beyond a heartbreaking chapter.

Over the years I’ve wondered what life would have been like if that surgery sixteen years ago would have gone as planned. If that tiny hole the size of the tip of a ball point pen hadn’t been missed. I wonder what life would have looked like had I never gotten an infection that nearly took my life but did take something else away. Would I maybe have a toe-head kid with springing curls and big blue eyes and a nose peppered with the trademark deep brown “Whitworth” freckles both my younger brother and I had as kids playing in the grass on a hot summer day? Or was that never meant to be mine in the first place? Was I never meant to be a mom? I’ve given myself permission to go to that place of curiosity so many times before and it’s a strange feeling that in just a few short days I’ll never again be able to wonder if just maybe there is still a chance.

I’ve grieved this all before, many times. I grieved when my ex-husband and I tried for two years and even went through fertility treatment to no avail. I grieved when I sat before the radiation oncologist and she told me my cancer treatment would more then likely send me into early menopause. And I’ve grieved the many times a woman with a big round belly full of budding life has walked by me and the quiet voice deep within that whispers, “that’ll never be you.”

Oh how I have grieved.

And it’s ok to grieve about this because as women, this is what we are taught to want from the time we can remember. I used to wrap my dolls in blankets and protect them fiercely from any oncoming threats as any mother would. Cooing and singing to them I had a list of names for all those unborn children. I prepared my whole childhood for something that in reality, I would never experience. Although I’ve spent a significant amount of time over the last few years asking myself if that was really a dream I truly wanted or just one that I was told to want, it’s still ok to grieve it even if it wasn’t.

I know this grief well. I’ve sat with her so many times over the years. Today though, she looks different.

Because I know it’s time. I promised myself when I turned forty. That’s when I would decided to do it. Maybe it was because my mom was forty-four when she was diagnosed with uterine cancer and her mom was young too and cancer takes time to grow. Maybe I just intuitively knew that it had to be forty.

I’ve worked really hard at looking at this decision through the lens of maturity and not through the one that says cancer is stealing from me once again. This decision doesn’t come on the heels of some medical disaster, it was my choice and sometimes it’s easier to decide in a disaster because then I got to be the victim. But I know now that my victim tendencies of the past have gotten me nowhere but a body full of rage and anger so palpable, I pushed a lot of people and opportunities away. I know I am no longer a woman who faces these things from that point of view. I’ve come too far to go back there now.

I’ve spend the better part of the last three years working on repressed disappointment, sadness and anger and have let go of a lot. I feel content deep within in a way I’ve never experienced before. In a way I still don’t have words to describe how I feel. I know, however, it may surface again. Old ways of doing things, old ways of feeling and I’m ready. I’m ready to meet myself differently. Meet myself with love. With acceptance. With my newer friend grace.

I’m committed to processing things as healthy as I possibly can and one of the things I’ve come to believe is that we are given the full spectrum of these magical feelings to experience them all fully. They are our greatest teachers. Our wise and at times, excruciatingly harsh elders. So when a few months ago they started speaking to me, that quiet voice deep within began whispering, I looked myself in the mirror and just nodded knowing that I would be able to handle it now.

It was time.

The After

It’s been six days since I had a total hysterectomy and surprisingly I feel really good. I had my uterus, ovaries, tubes and cervix removed. My trauma around routine surgeries told me these things go terribly wrong and I had a tremendous amount of anxiety prior to surgery. It’s been good for me to have such a smooth recovery. It has restore my faith in the medical world.

I remember waking from my surgery bracing myself for horrific pain, both emotional and physical, but all I felt was deep sense of peace as my eyes fluttered open and I saw my mom sitting quietly in the corner chair. I looked on at her and thought about all the pain she’s endured over the years from cancer and I’d be lying if I said a part of me didn’t do this for her too. Because I love her that much and it’s ok to do big things for those you love.

The choice I made means I get to eliminate two of the major cancers I statistically have a higher chance of getting and for a long time I couldn’t bring myself to do something because statistics told me to. However, after having two different Lynch Syndrome cancer and one very scary unknown tumor in my groin in the past fifteen years, I decided. It was time to live instead of continue to be consumed by the fear and anxiety that comes with the statistics.

I’ve been through a lot with my health in these short thirty-nine years and I’ve spent the better part of the last two years watching my mom fight for her life knowing that I had an opportunity to spare myself from some of what I was witnessing if I just made this decision.

I could only do it when I was truly ready though and honestly, I had no idea when that would be. Forty was really just a number I told myself knowing I could change it if I wanted to. Any moment sooner, instead of being filled with peace I would have been filled with regret. I know that about myself. I would have felt forced into doing something I wasn’t ready for. I learned that lesson the hard way many times before. This decision was all mine and could not be influenced by what other’s thought was best for me.

Although I had always promised myself forty, I knew I would be okay waiting longer if I needed to. But a few months ago something inside of me started thinking about it more seriously, it wasn’t some profound moment rather more of a quiet inner knowing, a feeling, a subtle shift towards a new perspective. I just new. I knew the time was approaching.

From the time that I confirmed my decision to the day I had surgery was two weeks. I sat across from my surgeon, my eyes staring down at the piece of paper with the drawing of the female reproductive system and scattered notes from my doctor describing the details of the surgery. I felt tears start to well in my eyes and I took a deep breath slowly lifting my gaze. First to my mom, then to my doctor.

“Okay.” I said. “It’s time. When can we do it?”

And just like that I knew.

When I opened my eyes after surgery I remember thinking, it’s finally over. Sixteen years of being scared of having to make this choice is finally done. And then I smiled because I was proud of myself. I felt a peace wash over me because I knew that I wouldn’t regret this but rather I’d sleep just a bit better at night knowing I’d never get uterine, ovarian or cervical cancer.

Ever.

That I’d never have to go through the pain and suffering endured by long treatments and scary outcomes. I was free.

And I felt deep peace that this choice wasn’t made on the heels of some medical disaster but one I made for myself over time, when I was truly ready. I was proud that grew to know and trust myself that well.

Today, I choose to live.

Today I want to live.

And maybe there will be days when I feel the depths of grief that come with this experience, this loss of sorts, but I’m not so worried about her anymore because I know she’s just a part of me. I know she is there for a reason and I’ve learned to let her take my hand and walk with me. With her I walk taller and just a bit more gracefully. I know she is no longer the enemy but rather, a close friend.

Hello Old Friend - The Return

Ladies and gentlemen. I have an announcement to make. 

This morning, one of the most wonderful things happened to me. 

It has returned. 

My period. 

Is back. 

Holy. Shit. 

Miracles. Do. Happen. 

Let the celebrations commence! 

Bring out the marching band and champagne cause Aunt Flo has come back to town and she likes to get turned up!

Actually, Aunt Flo likes to put on her cozies, crawl into bed by 8 pm and binge watch The Bachelor but hey, that's kind of like getting turned up in your late thirties, right? 

I have never, in all my life, been more excited about the presence of swollen boobs and cramps and I'm fully relishing in both. 

I don't even know where to begin.

About a week ago I started noticing old familiar things happening within my body. I cried relatively out of nowhere. Nothing too new here however, that coupled with sore ta ta's and puffy, swollen appendages and face, lethargy, brain fog and feeling like I wanted to eat all the chocolate in the world (side note: I don't even care for chocolate anymore), I couldn't help but feel as if my body was on the verge of starting her cycle. 

But it couldn't be. I was 100% convinced that radiation sent me into menopause. 

So I brushed it off. Couldn't be. Both my oncologists were pretty certain that because they had to alter my treatment and my right ovary was exposed to radiation scatter, I was more than likely going to lose the function of both ovaries, thus, go into early menopause. 

The funny thing is, when my radiation oncologist and I met way back in August right before my last treatment, I had asked her when I'd know if radiation sent me into menopause. She looked back at me with wide eyes and sighed, "Oh you'll know. Right away.  Within the month you should start getting the symptoms." She said.  

But nothing happened. No hot flashes or night sweats. No trouble sleeping, No huge change in sex drive. None of the normals signs of menopause were happening. 

And I was confused. 

So confused. 

However, I had my mind made up. My ovaries were crispy marshmallows and thus, I mourned and let go of a dream. 

The funny thing was, something deep inside of me wasn't sitting well with this. You know, that tiny voice we don't like to listen to. Let's call her Gut Feeling. Intuition. Home Girl. You get it, right? 

I kept getting these visions or whatever you'd like to call them, of one day waking up and realizing I had gotten my period again but kept brushing it off because I really didn't want to get my hopes up. Something deep inside of me knew though. 

So waking yesterday to her wasn't a total shock but at the same time, was. You know what I mean? When something happens that you knew was going to happen but then you're like, how'd that happen?

Yeah, that's exactly what happened. 

You see, I mourned the hell out of her this past fall. I cried, and let myself feel the feels and said goodbye way before I was ready to. I mourned all the dreams that having a period brought. Mainly, just my fertility and sex drive but I was never one of those girls who dreaded my period. It always made me feel connected to my sense of being a woman and I kind of like witnessing my cycle throughout the month.

But now it's back and I'm never going to take her for granted again. 

Claire Baker, and adorable gal whom I went to IIN with, has a whole program called Adore Your Cycle where she teaches you to look at your cycle as a gift rather than a burden. I'm kind of stoked to do this now. 

You see, we've been taught that our cycle is this dreaded thing that happens for a few days once a month because so many of us have had horrible experiences with it. However, your cycle actually holds so much information. It's quite powerful really. To be clear, when I say cycle I am referring to the whole calendar month. That is your cycle. Not just the three to seven days you bleed. 

There is a wealth of knowledge out there about the various phases of your cycle. Again, Claire has a wealth of information on this you can find here. And by the way, she has no idea I'm even linking to her. I've just always admired her work and have been leaning into the idea that we women are incredibly powerful, cyclical creatures. Think about what we could do and create if we learned to work with nature instead of against it!

Anyway, I digress a bit. 

So yes. It happened. This thirty-seven year old is back in action. Bring on the chocolate and rom coms because day two of aunt flo is in full effect and I need some Meg and Tom in my life! 

But in all seriousness, I still have a lot to think about. In a weird way, going into menopause early would have made my decision to have a hysterectomy easier. I still want to wait until I'm forty at the earliest but if I'm still flowin' then, I wonder how I will feel about having to decide? 

However, I'm incredibly grateful for a little more time to reconnect with the deeper meaning of my cycle. To explore how it influences my creativity and drive and see how it can teach me to love myself even more. 

I hope, if anything, that if you are a woman and reading this it's sparked a little curiosity within you. 

And now you officially know way more about me and my period then I bet you ever thought. 

You are welcome. 

Saying Good-bye To A Life-Long Dream + Update On What's Going On With My Health

"Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices." Paul Tournier

When I was a little kid I use to gather the family pets, usually a dog and two cats, and pretend they were my children. I'd reenact what I thought it meant to be a mommy, usually based off of what I witnessed from my own mom, who was an incredible mommy by the way (still is!). I'd spend hours in mommy land cutting the crust off their imaginary peanut butter and jelly sandwiches.

All I knew back then was no matter what, I was destined to be a mom.

I thought by twenty-two I should have been married and on my first child because that was what I knew. That was how it worked and that was how it happened for my mom. When that time came around and I hadn't achieved that I felt lost and like I had failed. 

As the years crept by and that story was nowhere near what my life looked like, the sadness got thicker and so did the feeling of failure. Then one day I met my now ex-husband and a twinkle of hope ignited within and I thought, "Yes, this is it. I'm finally going to be a mom."

When I couldn't get pregnant after two years of trying I once again found myself feeling as if I had failed and as if life had failed me too. Deep inside, in that place not many of us really like to go, I thought maybe there was something fundamentally wrong with me. Maybe I had made God really mad and I was somehow being punished and undeserving of having my own children. 

When my marriage crumbled at the age of thirty-four a little part of that dream went with it. I started to see the clock tick faster then it was already ticking. When doctors advise you at the age of twenty-four to have a full hysterectomy, your clock becomes more like ticking time-bomb. You are constantly feeling as if it's gonna blow. However, I was still hopeful that I had time. I had time to meet someone, fall in love and get the white picket fence and the family to go with it. 

I had to because I wasn't quite ready to answer the question, "If I wasn't going to be a mommy, who was I going to be?" 

But life is an interesting loop of mysterious experiences that sometimes just don't seem to make sense. 

Over the last four years I've experienced several big disappointments and have had to dig beyond my comfort zone and begin asking those harder questions. And now, as my body begins this next process induced from radiation, I have no other choice to begin finding the answers to the one question I've been avoiding the most. 

What I'm finding is an honesty and a resistance I really wasn't ready.     

I'm realizing that it's time to start saying good-bye to that life-long dream and life has quite literally thrown me into it. Ready or not, too bad!  

And as much as I tell myself all the optimistic things like, I really enjoy my freedom and I enjoy doing what I want, when I want to, I realize that I need to honor that life-long dream and mourn the death of it properly. 

I need to stop pushing down my feelings and thoughts and face them head on. 

I need to acknowledge and mourn that:

I'll never experience the excitement of peeing on a stick and seeing the pink positive slowly begin to form and I'll never nervously get to share the news with my partner, eager to see the smile form on his face and the joy twinkle in his eyes. 

I'll never know what it's like to feel the first flutters of life growing inside of me or watch my belly swell as I transition from normal clothes into maternity. 

I'll never know what it's like to rush to the hospital mixed with fear and excitement as I wait for my body to start a process that it was literally created for. 

I'll never lay in the hospital bed, exhausted and tired, waiting for the first sounds of my son or daughter's life echoing around me until they are safely in my arms, meeting for the first time. 

I'll never experience those first moments and that is a thirty-seven year long dream I have to mourn properly. And at times, that feels like a pretty heavy burden to bare alone. 

One of the shitty things about illness is you have no control over the wake of destruction it creates in your life. It rips through taking out whatever it damn well pleases and you sit back and just watch it do so. It's a little surreal if you ask me.

Yes, we do have control over how we perceive things and our attitude towards them. We all have those choices. And believe me, I practice these things daily but I'm human. A very emotional and deeply feeling human who can't paint away my pain with affirmations and positive quotes. If I don't feel this experience fully, I, Amanda Whitworth, will disappear into a numbness and fog that I couldn't live with. So, I choose to lean into the pain, hoping with every ounce of my being, that it's the true answer to healing.   

I also recognize that I always had the choice to walk away from radiation treatment. However, to live with that fear of whether the cancer had already started creeping up my lymph nodes into my lungs wasn't something I could live with. Radiation was, in my opinion, the lesser of two evils. Just how great of an evil well, I'm only just now learning the truth of what that means. 

But now, as others get to share their first images of the black and white outline of what's growing inside their womb and welcome their brand new babies into the world, I'm having discussions of a hysterectomy with my oncologist and wondering how many nights a person can go without adequate sleep due to a pain that wakes her every hour, before she loses her mind. 

And I know, believe me when I say I know, there are other ways of being a mother. I also know I am so lucky to be alive but please, I beg you, stop saying this to me. I know it's out of love and support but all it does is make me question my own emotions and feelings. It riddles me with guilt. It makes me feel like I need to hide the truth and that makes me feel ugly. That makes the anger I'm feeling inside bubble out of control until sometimes, I'm shaking so much I scare myself. 

I find myself keeping to myself a lot these days because I'm scared of sharing this pain with others. I see their discomfort with it and how no one wants to really talk about it or how they just want to fix it with saying things like, "There are so many ways to be a mom!" Or, "At least you didn't have to have Chemotherapy." Or, "It could have been worse!." 

Don't ever say these things to someone going through something like this. We already know this. Believe me. We are dealing with the guilt and confusion every minute of every day. 

But I'm determined to find my way back out of the darkness. It's just going to take a little time. But I'll find my way back, I promise.  

I just need to spend some time saying good-bye and getting use to the idea that I'll never get to have my own kids. I've got to find a way to make peace with that. Real peace. And that will take time. 

And that means some days I'm going to be angry as hell at everything and some days I'm going to cry so much that my body hurts but that is okay. 

This has been a dark few months for me but I've still been able to see glimmers of light along the way. 

On the heels of losing two wonderful human beings in one week to this horrible thing called Cancer, I know just how lucky I am. But that doesn't mean I don't get to mourn my own loss. That doesn't mean I don't get to feel my own feelings for what I'm experiencing. It doesn't mean that I don't get to feel the deep pain as I adjust to my new world, my new reality, in a body that is riddled with pain all the time now, one that doesn't feel like mine at all. Because I do. I do get that. 

I will find my way back to optimism. I will find my way back to believing in the good of all circumstances and believing that maybe this is happening so I can do something with it to help others. I will find my way back to doing some of the things I loved doing before even if it looks and feels different now. I will find my way back, I promise. 

But right now I get to properly say good-bye no matter how dark I go and I beg you, please let me. 

So what is next?

Being diagnosed with a rare cancer has been an interesting experience. It's really hard to know where you belong when you still don't even know where this started. However, we did narrow it down to being related to Lynch Syndrome. 

Back in May I underwent genetic testing and my results came back positive for MSH2 gene mutation which is what we expected all along. It's one of two possibilities with Lynch Syndrome (Hereditary Non-polyposis Colorectal Cancer) and kind of a scary reality to deal with. (click here for more info) 

So what this means is I have a higher lifelong chance of developing colon, rectal, uterine and ovarian cancer as well as stomach, small intestine, liver, gallbladder duct, upper urinary tract, and brain. 

Given that this is my second experience at such a young age, my doctor is taken this search very seriously and I am most grateful for him and his determination. I will always be vigilant and on top of my screenings and tests because after meeting a women in the waiting room of my oncologist office who was diagnosed with the same thing as me but much further along, a tumor had already formed in her Vagina and she underwent Chemotherapy and radiation, and none of it worked. Her tumor is resistant to treatment. Last week they attempted to do radical surgery to remove her uterus, ovaries, bladder, anus and colon however, when her surgeon opened her up, he discovered that the tumor was too close to her pelvic wall and there was nothing he could do. And it scares me to think that this could one day be me. 

Radiation has left the left side of my body riddled with pain and I'm trying to figure out what to do now as it's becoming a bit debilitating and chronic. I'm trying to find others who are experiencing similar issues so I don't feel so alone in this because most people who've had radiation that I've come across in real like have bounced back rather easily. As the weeks go on, I'm having a harder time walking and now, sitting and lying in bed. 

I spent my Halloween meeting with a Urologist at Moore's Cancer Center to discuss a procedure I had on Tuesday afternoon to look at lining of my bladder and then in the evening, I had my CT scan. No signs of cancer in my bladder.

I had my PET scan yesterday and now, I just wait for the results to see if this pain is a result of radiation or if the lymph node in my sacrum was actually cancerous and now has grown. 

I will say this. Radiation is no joke and comparing it to Chemotherapy as if it is a lesser evil isn't fair. It is all horrible and it all comes with experiencing great loss. 

Every morning I wake up in a body that feels eighty and it takes me all day to feel like I can move somewhat normally again. The pain in my back and hip are unbearable. I have a whole new perspective for those who have lived a long time with chronic pain. So much compassion and love to you because this alone could make a person crazy. Throw on how tired I feel all the time, like I can't get enough sleep, and the hormonal changes I'm experiencing, well, feeling a bit crazy doesn't even do it justice. And it's not something to joke about because to those of us who are experiencing it, it's really traumatic and scary and very isolating. 

And now a lot of my thoughts these days are of trying to come to terms with and accept the decision I'm making to have a hysterectomy because I'll tell you what, not having to worry about Uterine and Ovarian cancer on top of the rest, would be really nice. 

However, I have to fully come to terms with this on my own and in my own time. But I know one thing for sure. I don't want to die from this one day. I don't want to make the wrong decision only to have it come back to bite me in the ass. (No pun intended...okay, I had to throw in a little humor!)

I know all of this is leading me to something. I'm starting to see that light again. In between all the messy and dark parts I'm still experiencing, I see the twinkle in the distance and it's beautiful. 

On Waiting For What Is Next

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."

- Gilda Radner

Today, September 25th marks one month post treatment. One month of slowly healing the physical, mental and emotional wounds of the past six months. 

Both my radiation burns, the one in my groin and the one on my left butt cheek (I didn't know I was going to get that one) are almost nothing more then a faint outline and a patch of dry skin. I remember starring at my naked body in the mirror wondering if those burns would leave scars. It's nice to know they probably won't. Physical ones that is. 

I've started moving my body, slowly finding my way back into my physical sense of self. However, even that looks different. My body looks different. It feels different and I'm trying to work with those changes the best I know how.

Limited range of motion on my left side, random nerve surges down my leg, a strange tingling sensation in my groin, a slight limp, extra weight, scramble egg brains, lethargy, massively swollen boobs 24/7, which I imagine are hormonal changes triggered from frying my reproductive organs. All new enough to make me feel as if I'm living in a different body. 

I laugh now at the memory of talking with my mom three weeks into treatment. "Mom!" I say in my most dramatic voice. " I swear, I can literally feel my left ovary dying." It's funny now though, because I really do feel them dying. I feel them taking their last long, slow, deliberate breathe  and I feel this longing for just six months ago when my periods were like clock work and the womanly feeling I had each month at the sight of Aunt Flow. 

Now what? What do I do now? 

When most women spend so much of their time desperate to rid their lives of her, I'm desperate for just a few more months or years with her.  

I can't help but picture my left ovary as a puffed up burnt marshmallow dripping off a stick over the hot flames of a backyard fire pit. All from five weeks of a few minutes each day on a cold, sterile table in the basement of a hospital. 

How is it that I have to lose so much from something I never asked for? For something I had absolutely no control over? And then I hate that I just said that because I still have so much to be thankful for. 

All in all, changes are happening and it's safe to say I am not the same person I was only a few short months ago. I do believe, it's even safe to say, I am not even the same person as I was yesterday. 

And now I find myself in waiting. Waiting to see what happens next. How do you anticipate the future when there is so much riding on past events? I guess that is why you live in the moment.

I worry though. 

I worry with each passing day that there is a monster still lurking inside me, breeding, hunting, stealing from me, desperate to latch on and feed off every part until I no longer can breathe, suffocated by it's mere existence, and then, just like that, I'm gone. 

That is what keeps me up at night. That and the night sweats and vivid dreams and thoughts of how God chooses. You live, you die, you get to have children and you don't.

Then there is the sheer panic of not knowing how to exist in a world that doesn't really want to know how you are truly doing. A world that wants your diluted pleasantries instead of your God honest truth. 

"How are you doing?" They ask. 

"I'm great! I'm feeling more and more like my old self every day." I say with a fake smile. When what I really want to say is that I'm okay. I'm taking it day by day, moment by moment and coping the best as I know how. But sometimes I spin out of control and wonder where the last six months went. I wonder how I move forward relating to a world that has no fucking idea what I just stepped in. How do I smile and cheer on one more women who tells me they are pregnant and suck back the sobs when I see the reminder of what I will never have as they rest their hands on their swollen belly.

It's funny how bad you want something when you are no longer able to have it.  

So now I find myself in this place of ambiguity, both longing to close off from the world and needing to be seen. To hide away for just a short while longer as I sift through the dust and debris of this messy matter and tend to my heart. Yet, I long to be given new opportunities and people and to spread my wings and grow so wide that the world can't stuff me away into a little box labeled cancer or survivor or menopause or woman. 

I balance my worry and anxiety with meditation and writing, yoga and New Moon Circles and it helps. 

I've asked the world to bring me new people and situations aligned with where I want to go, with my goals and dreams, and it has. It's funny what happens when you set out with a fierce determination and deep clarity. I will not let this experience ruin me. I will do something great for the world with it. 

And then I spend my time with those in my life that I already value so much. I'm slowing down, just a tad, to give myself more to others. To be their shoulder to cry on, their comfort and support in their own turbulent times because one thing I've learned is that life isn't easy for anyone and everyone is doing the best they can. 

So now I wait. I do all this and I wait for what is next and I do my best to live my life and to figure out who I am after all of this. 

Then the call comes from my oncologist who was revisiting the tissue from the slides they created from the tumor they removed and he tells me I have to go in for another procedure to rule out bladder cancer and I laugh and say, "that sounds like fun."  And he nudges again about a hysterectomy and more searching for this monster. 

So I'm really not done yet. It's as if life is laughing at me and says, "buckle up Amanda...it's about to get bumpier."  

And I just sit here waiting telling everyone that I feel more and more like my old self and I feel like a big lier.