Death and Dying: The Stuff Nobody Wants to Talk About

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

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

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

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

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

Tick tick tick.

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

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

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

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

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

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

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

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

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

What if this doesn’t work?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.