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.

Hello Old Friend - The Return

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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

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“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.