It is done.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m exhausted.

And scared.

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

A hope.

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

And, only time will tell.

But history and time have shown me what happens.

When my tiny monster returns.

And those are the fears I must grapple with.

On my own.

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

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

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

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

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

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

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

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

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

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

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

TOXIC POSITIVITY AND OTHER BULLSHIT

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

It’s easy to wear a ribbon.

It’s easy to run or walk a race.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

WHAT TO SAY INSTEAD

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

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

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

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

AND…Going through cancer is VERY uncomfortable.

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

Ask real questions

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

Invite us to do things

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

Tell us about your life and what’s going on

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

Let us talk about ALL of our experience

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

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

Different ways to continue to support

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

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

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

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

We are scared of coming across as too needy.

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

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

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

Our hole lives change over night.

Be okay with that.

And show up for it.

xo, amanda

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

The Stories That Lie Just Beneath

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.