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.

Chemo, Covid, and No Eyebrows. Oh My!

It’s 2:30 a.m. and I’m wide awake. I guess that is what happens when you go to bed at 7 p.m.

My dog, Baker is curled up beside me. His heavy breathing tells me he isn’t budging. When I woke he was sleeping half on me per usual. His head and half of his body weight were resting on my back as I laid pressed to the edge of the bed. This is normal though. Part of our nightly routine. I wake, have an internal debate on how uncomfortable I am and determine whether or not I muster up the energy to push him off of me and over to the other side. He’s pretty damn cute though so it’s a hard decision to make.

I know he is just trying to protect me. My own little alarm system. Already a very protective and attached dog, when I had surgery and even more so when I started treatment, his protective instincts reached an all time high. Nobody gets past him, not even my mom when she comes down to my place. He stands on guard, barking and jumping up and down in front of me as if to say, “try me mother ‘f&$ker! Try and get to my mommy!” That is, until she pulls out a some kind chewy treat and his defensive demeanor melts into a puddle in front of me on the floor. Thanks buddy.

It’s day five in this chemo cycle, the third cycle of six, and yesterday I tested positive for Covid. Let me tell you, I’m feeling pretty darn great right now. This coupled with my bald head and almost non existent eyebrows, well, I’m ready kick ass and take names. (I know, I hate that expression too but it was the only one I could think of right now with the two brain cells I have at the moment). As long as I can do all this ass kicking and name taking from the comfort of my paisley sheets, wrapped up in a mix of my dog and my duvet.

I’ve had a cough and stuffed up nose for a couple of weeks now but I just figured it was due to the side effects of treatment and my non existant immune system so I just watched it and told my oconologist at our visit two days before this last chemo cycle. I already mask up wherever I go so I feel good about that.

Let me just say though, the level of vulnerability you feel when you test positive for Covid when you literally have next to no immune system is something I’d rather not experience. Alas, here I am.

Yesterday, Monday was the worse. I woke about 5 a.m. extremely nauseas which I think is more a side effect from chemo and the fact that I never woke up in the middle of the night to take another anti-nausea pill. I found myself hugging the porcelain throne, dry heaving, sweating and alone. Another new low. This was the first time my nausea had reached this level. I’ve been lucky being able to manage it with the medications my doctor prescribed at the beginning of chemo.

I thought maybe I would be spending my morning curled up on the linoleum floor but I managed to find my way to the kitchen, feed Baker and Louie who were both eagerly bouncing up and down signaling to me that they really didn’t care what I was going through, they were hungry and their needs come first. Blissfully unaware of the fact that I was mere moments away from losing whatever remained of my dinner from the night before.

After choking down my anti-nausea pill, my pill for nerve pain and something else I’m taking for some other kind of bodily discomfort, I found my way back to bed and fell asleep for a few more hours.

I woke moments before my phone started ringing and I realized my mom was calling me. From upstairs. Something we both are guilty of doing because neither one of us are able to climb the stairs that separate our two places easily these days.

Apparently, I had also managed to send her a text before I fell back to sleep. “I’m not doing good” was all it said. I picked up the phone, “Honey I have the flu.” Selfishly my first thought was great, my caretaker also needs a friggin’ caretaker. I hung up the phone and slipped dipper into the depths of my uncomfortable vulnerability and aloneness.

I still had hope though. I could call someone and they could come help me if needed. That was, until my mom called back a short while later. “Honey, I have Covid.”

“F&%k!!!!” I screamed in my head.

"Great. I better test too.” Was all I could actually get out.

In the three years that Covid has been in our lives I have never tested positive. There have been several times when I swear I should have but no matter how many times I tested, every one came back negative. Until yesterday. Those two red lines appeared quicker then I’m comfortable with and I thought about how ironic it was that I always hoped one day I would stare down at two red lines on a little test but these are not exactly these ones I was hoping for. Staring back at me, I mumbled, “well, I’m definitely not pregnant so I must have Covid too.”

You know that vulnerability I felt earlier, well, that has now reached a level I never knew was possible.

Covid and chemo. Not the best companions I would say.

Then, this morning, I looked in the mirror and saw that now, I almost, have no eyebrows. That coupled with no hair, I realized I’m starting to resemble a naked mole rat.

And I sigh.

Three more to go. I can do this.

Going, Going, Gone.

When I was younger I loathed my hair. Curly and wild with a mind of its own, I would sit looking at myself in the mirror and grow angry over the fact that I felt so different from my peers around me. Me with my corkscrew curls and them with their bone straight and manageable locks.

All I wanted, more than anything, was just to blend in. My hair though, my hair made me stand out.

My mom would constantly wipe away my tears and promise me that one day, one day you will love your hair Mandy. Woman pay hundreds of dollars just to have hair like yours.

I’d roll my eyes and think, no. I want straight hair.

In high school I’d wake at 5AM daily to spend an hour plus blowing my locks straight then ironing them out with the latest hot tool that came with the hope of fitting in.

At some point in my senior year of high school I surrendered to what I was born with. I was tired. Tired of fighting it and tired of spending so much time on attemping to alter it to look like everyone else.

Over the years I’d learn that my mom was right about this too. I did learn to not only love my hair but became so deeply grateful for the individuality that came with each twist and coil and the wildness I felt looking in the mirror.

My hair became one of my favorite physical attributes.

I grew it long and stopped using so many hair products to try and control it into place and allowed it to be wild and free. I allowed it to live untamed and soon realized that it was as if allowing my hair the freedom to be itself allowed me to as well.

When I was diagnosed with cancer back in November and after waking from surgery to learn that I would have to do chemotherapy, my first questions was, ‘will I lose my hair?’

Originally the plan was to do a chemo combo that would preserve my hair. Maybe it would thin out a little bit but would still allow me to walk throughout the world with a little dignity in tacked and animinity on days I didn’t want the world to know.

However, plans changed and although I was still given the choice, I knew in that moment the only choice I really had. And it came with losing the very thing that made me feel the most like me.

Despite my best efforts at keeping as much hair as I possibly could with cold capping, exactly fourteen days after my first chemo infusion I woke and ran my fingers through my hair and with it came a handful of curls. I knew at this rate my hope of keeping at least fifty percent of my hair was going to fade fast and I wondered what was I really holding onto anyways?

By mid-morning on Friday so much of my hair had come out that I sent a text to my friend who is a hairdresser and asked if she could cut it short. A few hours later I was sitting in her chair watching her cut my long locks into a cute bob.

A moment I thought was going to be sad turned out to feel…fine. I felt nothing but excitement when I realized my new do was actually really cute. I can do this I thought.

But the hope of this slowing down the hair loss began to dwindle by Sunday morning when so much hair had fallen out that I started to get bald patched peppered throughout and the joke I shared with my family and oncologist started to become a reality.

“If I start to look like Gollum from Lord of the Rings, I’ll know it’s time to just shave my head.”

By Sunday afternoon I looked in the mirror and knew.

I was already going to my younger brother’s house for dinner and I Facetimed him.

“Do you have clippers?”

“Why?”

“Cause I’m starting to look like Gollum. We are shaving my head.”

At first he wasn’t on board. All he could see what a decent amount of hair remaining but I flipped it over to the side to reveal what was hidden beneath my carefully placed strands.

“I can’t do this. I can’t walk around with bald patches.”

I thought I would cry. I thought I would stare at myself in the mirror as locks fell to the ground and feel as if a part of me was dying but the truth is, I didn’t.

Instead, I laughed.

As I shaved the first bit off on the side of my head I was met with a rush of adrenaline a joyful giggles. I was surprised to see that instead of sadness, I felt free.

We shaped my hair into different styles from mullet to mohawk and resided on leaving a bit on top just for fun. I mean, I’m probably never going to shave my head again, I might as well have a bit of fun with it.

By the next morning even that was starting to come out in droves and Monday afternoon I decided to say goodbye to the last strands and shave my head completely.

And for the first time in my life I have nothing to hide behind.

And that feels utterly liberating.

And absolutely freeing.

This Too Shall Pass

On Friday, January 13th, I began a journey I would never wish on anyone. I had my first infusion of chemotherapy and immunotherapy. This week, to put it bluntly, I’ve been a little worse for wear.

It’s funny, I had these grand delusions that I would be back up and working in just a few days. I can do this I thought. I’ve been to hell and back before and I always bounce back quickly. I will with this too.

This beast however, is one I have yet to experience before. This beast, has annihilated me, leaving me question so much already.

I’ve been dealing with neuropathy that is so painful I don’t quite have the words to describe it other than feeling as if my nerves are being ripped apart by electrical shocks and waves every few seconds. This began Sunday evening and has yet to leave. And that alone is terrifying. To think of a life riddled with this kind of pain.

I hear the second week is better though and the third well, I welcome that with open arms as it teases me with thoughts of being “almost normal” again. Yet, I know when I finally make it to week three the clock starts ticking again until I’m sitting in that same chair, in that same cancer center, getting those same drugs pumped throughout my body. Round two.

And the cycle begins all over again.

I’m doing my best to hold on to little moments of joy, although few and far between, and my mantra, although hard to fully believe, this too shall pass.

This too shall pass.

And I pray that it does and that this time next year I’m pain (and cancer) free.

I hope the rumors are true though and next week I’ll feel better and the following more like myself and I can get back to work in whatever way that may look like for the foreseeable future. I miss my craft. I miss creating and putting my thoughts into action. I miss the chatter of a podcast playing in the background while I get lost in my shop.

I think one of the most uncomfortable parts of all this is the not knowing. Not knowing when life will feel normal again. Not knowing if or when I can work again. Not knowing if this pain will subside enough for me to do the things I love dearly. The things that make me who I am.

All I can do is the very thing I’ve been trying to figure out how to do my whole life. Surrender.

Surrender, surrender, surrender.

And wait.

And just be.

And that, my friends, is an art in and of itself and I haven’t really learned that medium yet. But like with all my other artistic paths, practice makes me better and better. So, I’ll practice this too.

And eventually, this too shall pass.

xo, amanda

P.S. - Ongoing help is probably going to be vital until I figure out my new flow with work. I’m so grateful to you and to all who have supported me in the various ways laid out in my Cancer Gift Registry. It’s truly lifted me up and made me feel so loved.

You can find that registry here.

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