Dear cancer, please leave us alone.

If you want to make God laugh, tell him about your plans. - Woody alan

I remember the day as if it was yesterday. I was sitting in my dorm room a few weeks into my freshman year at Washington State University when my phone rang. Well before I had my first cell phone, I picked up the landline, bringing it to my ear.

“Hello?” I said.

“Hi, Mandy.” My mom’s voice echoed in the background.

“Hi, Mom, what’s up?” I asked.

“Mandy, I need to tell you something.” Her voice cracked. And then the three words nobody wants to ever hear, “I have cancer.”

The rest is somewhat blurry as she filled me in on the details. As we hung up the phone I sat, staring at the wall behind my desk and all I could think was; my mom is going to die from cancer.

This was nineteen years ago and a time when all I knew was cancer was a death sentence. And although my mom is still with us, the way I felt when I heard she had cancer for the first time has never left my heart.

And each time one of us is diagnosed, the same feelings resurface. And as much as my family has dealt with cancer, it’s never easy to hear the words.

It was only a few short years after my mom’s cancer that my older brother, then twenty-six, called to share his results too.

“Well Manda, it’s colon cancer.” He said into the phone from Texas where he was stationed as a Captain in the Army.

Colon cancer? Isn’t that…for old people I thought?

Little did we know how untrue this would be.

Less than a year and a half later, on the heels of desperate pleas from my mom, I went in for a colonoscopy because her oncologist was suspicious that this could be genetic. In my foggy haze, I woke to hear my doctor say, “Go get her mom and bring them back in my office.”

I didn’t know what it meant but I knew it wasn’t good.

Although it wasn’t full-blown cancer, the large polyp in my colon was in the last stages of turning into cancer and thus, was treated as if it was cancer. Four surgeries, one deadly infection, an ileostomy bag (which I no longer have), shunts and tubes and drains throughout my body, and almost 30 days total over the course of the year in the hospital and only a few short months later I got another call from my mom…

“Honey…I have colon cancer.”

Hands down the toughest year, chemotherapy riddled my mom with pain so severe, she almost quit. But she made it.

And we thought the “cancer years” were behind us after that. We really did. Only a year later we received a phone call from my grandpa, my mom’s dad, and learn that he now had colon cancer.

And then my grandpa, again…bladder cancer.

And then my cousin, Becca, who’s passing on December 8th, 2013, ten short months after being diagnosed with cancer left so many hearts broken.

And then our dear friend Greg. My stepdad’s best friend, who was more like a brother, was diagnosed shortly after that and after three years of fighting, passed away last October 2017.

And then me. Metastatic Cancer of an Unknown Primary source. What does that even mean?

I lay this all out for you to see clearly not for you to feel sorry for us but so you can see why my family is exhausted... It’s been almost two decades of nothing but cancer.

So cancer, please, leave us alone.

But I know better. I know better to cry out such demands.

Because on Tuesday, September 25th I got a call…

“Mandy,” my mom’s voice, hard and stoic, “Honey, I have cancer again…”

So here we go, once again...

And we will keep you posted as she wins this battle too.

Because she's a warrior now.

She has no other choice.

Prayers and positive thoughts welcomed always.

One year later - this is what a year of cancer looks like

There will come a time when you believe everything is finished. That will be the beginning. - Unknown. 

I've tried really hard to find the right words to share what this week means to me but I'm falling short. 

What I really want to say is thank you. 

Thank you for supporting me and holding me up when I was unable to do so on my own. 

Thank you for allowing me to be so raw and authentic and feel safe to bare my soul during this difficult time.

Thank you for laughing with me while I'd find my way out of the darkness and back into my funny and sassy self. 

Thank you for all the notes, messages, comments, flowers, gifts, dinners, prayers, good thoughts, energy, and most importantly, love. 

I truly would not have been able to do the last year without you. 

I don't know what the future holds and to be honest, whatever comes my way I know I'll handle it just the same. 

Often you read that difficult times will make sense down the road. I'm not sure if that is always the case. Some situations just never make sense. However, I know for me, it is. All of this is starting to make just a little more sense. 

Most importantly though, this last year has taught me just how important it is to have faith and to be okay with asking for help. 

I did my best to document the year in photos. One thing was consistent, as much pain I was in, I often found myself smiling. A lot. And that felt really nice. 

To many healthy years ahead. 

This is what a year of cancer looked like. 

---

A few days after being diagnosed...a love of my life found his way into my heart. 

I had a real life Grey's Anatomy experience with a room full of interns...

I was surrounded by love and friends who give uplifting gifts that make your stitches hurt from laughing...

Family came to visit and take care of me and I got the most amazing one-on-one time with my sis-in-law...

And my older bro...never finished that chicken coop though :) 

I had lots of pokes, prods, needles and procedures. So many. 

But I had my first art opening...

And a trip to Joshua Tree...

And a drive north to Seattle...

To be with the three other loves of my life...

I walked into my first day of treatment ready to face it all...

And then flew to Miami a few days into treatment and found a few days of solitude...

My favorite part was crossing each treatment off...

And just like that, six weeks, five days a week...was finished. 

And I turned that page...

And took myself to Idyllwild for my birthday, rented a little cabin in the woods and hiked for the first time since treatment ended...

Sadly, I lost the other love of my life. 10 1/2 years together and I will never forget his love. 

And I met my women for our Red Tent. I didn't leave this spot all weekend. 

Spent Christmas with my soul sister...

And enjoyed life.

that's a wrap

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. 

Liar Liar Pants On Fire, The Truth Shall Set You Free

“Above all, don't lie to yourself. The man who lies to himself and listens to his own lie comes to a point that he cannot distinguish the truth within him, or around him, and so loses all respect for himself and for others. And having no respect he ceases to love.” 
― Fyodor Dostoyevsky

When I started writing in this space almost five years ago, my life was going down a very different path. This blog was called The Savoury Soul and it was where I attempted to talk all things health and wellness.  

I say I was attempting to write about health and wellness but everything felt very sterile and forced. My writing was a mix of how to's and unwarranted 'do this and you'll be happier!' advice. 

What I really should have been writing about, what would have felt way more original and authentic, would have been, "do this and this so everyone you know thinks you have the perfect little life.” And under no circumstance whatsoever admit or even hint at the truth.

All I remember was feeling like the biggest fraud and that I had so much to say, so much to share, but what I was writing about was not even close to being it. 

Instead, I spent a lot of time fluffing up my life and pretending I had it all figured out. 

In reality, what I really wanted to share was the truth. I wanted to scream out, "Hey! I have no friggin' clue what I'm doing here and I want out of my marriage but I have everything I ever thought I wanted so why am I so unbelievably sad and miserable? And why is it that when I look in the mirror I have no idea who the person I'm looking at is? And does anyone else out there feel this way?"

That is the stuff I really wanted to write about. 

The truth.

Real life. Real stuff. Real feelings. 

Raw, gritty, honest to God truth.

I wanted to expose the complicated feelings I was experiencing from being married to someone who had no idea who I was nor really even cared to find out. I wanted to write about how I had no idea who I was either but was desperate to find out.

I wanted to talk about how I had everything I ever thought I wanted but all the stuff in the world couldn't fill the ever growing hole inside. I needed to confide in someone, anyone who’d listen, that sometimes I’d dream about telling my husband that I was going to the grocery store and get in my car and drive away. And just keep driving. 

I wanted to tell the story of how on my wedding day as I stood in front of my family and the two friends I was "allowed" to invite, I wasn't thinking that this was my dream day. I was looking around thinking about all the people I wished were there but weren't because my ex made a big stink about the fact that this was his second wedding and "nobody wanted to come to a second wedding."

"How do you think it makes me look Amanda?" He asked. I remember thinking, "But...it's not just about you. Shouldn't we compromise? Isn't that what love and marriage is about? Give and take? Shouldn't you want to see me beaming from the happiness and joy I feel from having all the people I love at our day? 

 Instead, I stood in front of the twenty people in attendance and said my vows while secretly wondering how long it would be before we got a divorced. Instead of being in ah of this person I was committing my life too, I stood there with a fake smile saying some of the most important words to a man who no more then two weeks later met another women on a business trip.

I wanted to share how the first time I learned of him cheating was before we were even engaged. I wanted to leave then but was terrified because I didn't know what I would do. And then he said all the perfect words knowing very well that I would cave from hearing those words. I'm sorry. You mean everything to me. I will be better. I don't deserve you. I love you. 

He promised he'd change. He'd get help and go to therapy. And I was a sucker for empty promises. I was addicted to the love you think you feel from being told that US was finally enough to create change. That you really mean something. That you are worthy enough for them to change. 

I wanted to share that not much about US worked and I wondered if others were living in marriages that felt like living in a glass house. Just one more lie and everything may shatter around you.

 Were others drawing the drapes closed tightly at night to cover the truth of their relationships too? Were others as desperate to keep their lies tightly sealed just like I was?

I wanted to write with such brutal honestly that when I reached the end of the page I would feel empty, cleaned out and purged of all the lies I was telling others and myself. I needed to shed the excess weight so I could stare naked in the mirror and see Amanda for the first time.

But I couldn't. Instead, I filled these pages with boring facts that made me feel inauthentic. All because I knew that once I shared, there was no going back. Once it was out there everyone would know I, Amanda Whitworth, was a big…fat…lier.

So I just kept quiet and kept writing about boring topics because I felt called to write but was too afraid to write about what it was I felt called to share. 

Those thoughts and feelings, those would stay buried deep within, folded into the layers of my heart.

But the truth will set you free they say and freedom was what I was longing for. So once I had a reason that was good enough, once I had been broken and beaten down just enough, I got up the courage to say "no more!"  And I ran 1200 miles away to a little beach town so I could give myself the space and time to finally open up my heart and share what it is I'm suppose to share.

The truth.  

And the most interesting thing has happened with being brutally honest. Every time I open up and share a little bit more of my truth I feel free.

I have given myself permission to peel back the layers and get down and dirty with the God honest truth and it’s become harder and harder to lie to myself. Sometimes the truth hurts. Sometimes it really sucks having to referee the battle between my head and my heart and make a decision that I know is best for me but I don’t want to make. Sometimes that decision brings about it’s own pain. 

I’ll tell you one thing though, the feeling I get when I’m honest with myself and take action upon that honesty is almost indescribable.

No amount of sex and drugs or food and exercise or shopping or anything else that temporarily fills those holes and stuffs down those lies can make me feel as high and full as the way the truth does.

And that, my dear, is why the truth shall set you free.

So that you can be.  

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.