I Am No Super Human Void of Pain and Suffering

The last few days have been hard. I’ve been swept away by a lot of heavy feelings of grief as the reality of the next few months sets in.

Although I’m grateful I’ve had more energy the last week and the bone pain is gone, the fatigue I feel is something hard to explain. It’s deep in the layers of my skin, down to the bone. It’s hard to get a good flow doing much of anything and right now, my workdays look a bit like scattered dust blowing in the wind.

My hair is starting to fall out too. I’m lucky I have a lot of it but every time I get out of the shower and run a comb through it I’m met with having to say goodbye to a good handful of my identity.

Oh the weight gain and muscle loss. I’ve always been very active. I’ve climbed the tallest mountain in the lower 48 and finished 3rd in my age group in triathlons. Now I can barely recognize my body in the mirror and get winded walking up the stairs. It’s a hard adjustment. To look in the mirror and see a stranger at times.

I’m angry and sad. I find myself kicking and screaming inside that my life has to be paused in such an extreme way once again.

I was just getting back on track from my last cancer (6 years later) and from my hysterectomy two and a half years ago. I was finally able to grow my hair long. I found a way to move my body and was seeing older versions of her here and there. She was coming back alive.

I don’t go to this place often anymore because despite all of it, I’ve learned to find a lot of joy in the life that I now have.

But these feelings, This grief, it’s important too. And I’ll let it wash through me. And I’ll honor its purpose.

Because I’m human.

And cancer treatment is traumatic.

All of this is traumatic.

And I am no super human void of pain and suffering.

I am, grieving.

What You Need to Know About Having a Hysterectomy and Medical Induced Menopause

Something that I’ve been thinking a lot about is how when you are a ‘sharer’ and you put your stuff out into the world, it always seems to land in the laps of those who need to read it. In the moments when I want to close up and fight the calling from deep within to share more of my story, more of the raw and precious parts that I often want to hide, I remember the random emails and DM’s that find their way to me that say, “thank you for sharing your story. I’m going through this too and needed to hear this.”

It’s been four and a half months since I had my hysterectomy and I’ve had countless people reach out to me because they found this post I wrote about deciding to have mine back in July. Most of them are Lynch Syndrome too and every time I read the parts of their story they share, I find myself overwhelmed by how many people are walking this earth and how every single one of them is going through their own stuff. Their own worries and fears and pain and healing.

Truth be told, I haven’t regretted my decision at all. That’s not to say I haven’t had my moments of deep grief and reckoning with what this type of surgery really means and the reality that, there is no going back. Once it’s gone, it’s gone. There is no going back to my doctor and saying, “Um, doc. Ah, can you like, put it all back in me now cause I think I made a mistake. I, um, I think I actually do want to try for some kids. Yeah, I think I made a mistake”

I think that has been the hardest part. Really accepting that I no longer have a place to grow life. I no longer get to dream of growing that life inside of me. I will never know what that is like. I will never feel a first kick or feel that rush of excitement when my water breaks. I will never be consumed with the complex emotions when the life is pulled out of me and placed in my arms. And well, that makes me sad and I’d be lying if I said I don’t have moments when I succumb to those harsh realities, curl up on the couch and mourn what will never be mine. And that is okay. I will do that for as long as I need to.

But I don’t regret my decision because something deep within me knew it was time and a few weeks later I got the confirmation that had been whispering to me from deep within. Upon hearing that the pathology report showed premalignant lesions (pre-cancer), I smiled behind my cloth mask back up at my doctor and all I could say was, “I knew it. I knew something wasn’t right. I f*&king knew it.” And then I apologized for swearing.

So now that a bit of the dust has settled I figured it was time to answer some of the more burning questions I have gotten about the surgery and menopause.

Ah menopause.

With this surgery I had my uterus, ovaries, fallopian tubes and cervix removed. It’s all gone and it’s honestly still weird to think that those organs that lived in my body for thirty-nine years are sitting in a trash can somewhere.

Without the female reproductive organs I have no period and no hormones that were developed every month from that area. This is an automatic admission into the very stage of life we, as women, are taught to fear from a very early age.

It’s suppose to happen naturally, with age not medically induced and this was something I really struggled with. It felt so preemptive for so long to me that I had a really hard time wrapping my head around the fact that I would officially be in menopause, something I felt like I was years away from.

In reality, because of the radiation treatment I had in July and August of 2017 due to my metastatic cancer diagnosis, I was already partially in menopause which was confirmed by my doctor when he visited me in the hospital the next day. My left ovary was completely menopaused and my right had endometriosis and there was a shit ton of scar tissue. It also confirmed that I would have never been able to have kids naturally.

Know It’s Forever

I’m in several Facebook groups for Lynch Syndrome and one for Menopause support and sometimes I can’t believe how cavalier some people are about elective surgeries such as a Hysterectomy. Part of this, in my opinion, is because of the nonchalant attitude you get from a lot of the medical community, mine included. Although I really like my surgeon, at times I felt he was very dry about a very serious subject. When I asked about menopause he didn’t have a lot to say other then the fact that I can go on HRT (hormone replacement therapy) and that because of my age, I’ll probably be fine.

And then there is what I mentioned above. There is no going back so chill for a sec, take a breath and take the time to really think this through.

Hormone Replacement Therapy (HRT)

At the time of my surgery I was thirty-nine and my biggest concern was being stuck with gnarly hot flashes so I opted to go on HRT. I’m on a patch called Estrodial and it’s time released. I wear the same patch for a week. I honestly don’t know that it works but wearing it does something to my brain and makes me think it actually works. So I wear it. I currently need to schedule an appointment with my oncologist and discuss it further because like I said, I’m not sure it works and the ones my insurance pays for are big and ugly. Not the cute little see through ones that put on in the hospital.

Hot Flashes

I started experiencing hot flashes after I finished radiation therapy. I remember sitting on the couch and being overcome with this intense feeling of my body being on fire and having to rip my shirt off. Yes, it was that dramatic. Sweat came out of nowhere and was chilling out under my boobs and dripping down my back and chin. Hot flashes are not fun. The first week after surgery I laid in bed and just waited for them to hit like everyone talks about but it was actually a slow progression which may be due to the fact that I was already in partial menopause. I hear that for some women, especially with medically induced menopause, they hit like a freight train. For me, it was more like the Spirit of Washington dinner train, slow and steady chugging along to insure you really get the full experience.

I mostly just get them at night. Actually, I only get them at night. When I’m suppose to be asleep. During the witching hour. I wake and it feels like my skin is on fire and I want to crawl out of it but can’t figure out how so I rip off all of my clothes and lay there naked only to find myself freezing five minutes later putting it all back on. If anything is touching me I feel as if I will cry. It doesn’t last long but it is intense.

Mentality

I can’t say this enough - this is a NO GOING BACK surgery. Once it is done, it’s done. I feel like surgery is just thrown at us so often these days that it’s really important to really think about the consequences and where you are at in your life. If you have the luxury to sit on it for a bit, please please do so and talk with a mental health professional first.

Pain

You are going to feel like shit for a few days but not like the worst you could feel, just super uncomfortable and full of air. My surgery was robotic which was nothing compared to when I had part of my colon removed and they cut me open from the top of my pubic bone to my belly button. That was literally the most painful thing I have every experienced, besides the infection I got from that surgery.

Here’s an image to show my incisions. If you look close, you can see my other scars too! My stomach is cute but it also looks like Freddy Kruger and I got caught in a wrestling match.

The pain from this surgery comes from all the air they pump in you to get the robotic arms in the five small incisions. Once that subsides, you mostly feel like you got hit by a truck for about two weeks. I was working out again about that time. Oh, an they pull all the organs out through your vagina so that didn’t feel too great afterwards either :)

Insomnia

This sucks. There is no other way of describing it. As someone who cherishes sleep greatly and needs a good amount of it, the 1pm wake ups that last anywhere from 1-3 hours have been gnarly. Mainly because regardless, I still naturally wake up between 5 am and 6 am. Some things that have been helping:

Mary Ruth’s Nighttime Minerals

Natrol Melatonin Advanced Sleep Formula - I think I got this at Whole Foods.

Edibles - honestly, this one is rare but if need be, I just get a little baked before bed and sleep like a baby :) and I mean, I live in Seattle so they are everywhere.

Mood Swings

Honestly, this hasn’t been an issue for me. I was already a moody person ;). Kidding. Not really but seriously, I’m actually WAY more chill and calm post surgery. I think mainly because I had already started the transition process after radiation, my hormonal decline wasn’t as dramatic as it would be had I not been in partial menopause already. I’ve also been working with a therapist for the past two months and doing EMDR therapy and I feel like that is providing a lot of help with addressing things that would normally cause the pendulum to swing. I also think because there was so much damage to that part of my body that all the scar tissue and the hormonal imbalances were messing with my mental health.

Hair Loss

It’s all making sense now. After radiation my hair started falling out in clumps and breaking and I have had a really hard time getting it back to healthy ever sense. It’s slow to grow and it frustrates the hell out of me. I want long hair damnit! But alas, it barely reaches my shoulders after three years.

In July I stumbled across Organic Olivia’s Mane Magic and decided to try it and holy hell, it is literally one of the only things that has actually worked. I also got more compliments on my hair the next month then I have in the three years post treatment. Surprisingly, I got the most compliments about my hair when I was going through treatment. I also was told I was glowing all the time to which I would laugh out loud and say, “Well, I’m in the middle of radiation so that may be why.”

Nettles and Hibiscus Tea - I also drink this every day and I think it adds a softness to my hair. You can get this pretty much anywhere.

Weight Gain

Honestly, this was a HUGE fear of mine. Partly because I have had pretty bad body dysmorphia in the past and had an eating disorder for about fifteen years. Well, not even partly. That is like, the whole reason. And even though I am in a great place with my body now and have done a lot of work around my fears of gaining weight, this experienced triggered me and I had a bit of a resurgence.

For whatever reason, I thought I was going to wake up and magically put on twenty pounds. I think my ‘people’ grew really tired of my obsessive worrying about this. It’s been four and a half months and I have actually lost weight. Something to take into consideration is YOUR body type, activity level, and diet. I’m naturally small and petite. I work out regularly, I don’t adhere to a diet per se but I do eat mostly plant based but if I want a burger, I eat a burger.

Bowel Movement Changes

Maybe this is TMI but hey, when you have part of your colon removed at twenty-four and are left with a temporary ileostomy bag you just don’t give a shit anymore. Ha! See how I did that. I’m so puny! Anyway, I went from being chronically constipated to free flowing after surgery. My surgeon told me that I had an extreme case of scar tissue through that area so my theory is that it was creating issues for my bowels. Once that was all out they were like, “cool, now I can finally do my thing again…sixteen years later.”

Fatigue

This was very challenging for me. I’m a natural “go getter” and I like to do. I love bouncing around throughout my day either in my shop or working on other projects and the fatigue has been hard for me. I’m tired. A lot. Like, all the time. Not just tired but T.I.R.E.D. Even four and a half months later I am always tired. Listen to your body and rest. Even though this surgery is mostly robotic, it’s still major surgery and your body is getting used to living without those parts, a hormonal decline and all the mental stuff that comes with it. Sometimes I go to bed at 7 pm, other times my body is like “Hey! It’s 9 pm! Let’s get this day started!” Like right now.

Sex

It feels really weird to talk opening about my sex life on the internet but it is a huge part of this experience. You are told when you have this surgery that nothing can go inside you for twelve weeks. I take these things very seriously because I have heard horror stories which I will spare you but if you want to know them just shoot me a message. I am single as well and not currently dating anyone and not into casual sex (no judgment! Just not my thing) so this one has yet to be explored but I will say this, I am extremely nervous about it. Sex is great. Like, REALLY great and I hope my body doesn’t throw a tantrum when I try it again. To be continued…

Well, I think that is a good place to end it. As I think of more and experience more I will add it to this post. I think something important to remember is that everyone is different. I’ve heard that you should look to how your mom responded to menopause (if you have that privilege). My mom said she barely had symptoms and she also was thrown into medical induced menopause at forty-four because of a hysterectomy.

As always, you can reach out to me to talk. It’s not an easy decision and definitely not one to be taken as lightly as it often is.

Amanda’s Email: amandawhitworthcreative@gamil.com
Find Me on Instagram: @_sawdustandsoul

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.

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

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

The Before

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

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

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

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

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

Oh how I have grieved.

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

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

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

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

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

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

It was time.

The After

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

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

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

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

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

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

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

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

And just like that I knew.

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

Ever.

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

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

Today, I choose to live.

Today I want to live.

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