It is done.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m exhausted.

And scared.

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

A hope.

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

And, only time will tell.

But history and time have shown me what happens.

When my tiny monster returns.

And those are the fears I must grapple with.

On my own.

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.

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

Dear cancer, please leave us alone.

If you want to make God laugh, tell him about your plans. - Woody alan

I remember the day as if it was yesterday. I was sitting in my dorm room a few weeks into my freshman year at Washington State University when my phone rang. Well before I had my first cell phone, I picked up the landline, bringing it to my ear.

“Hello?” I said.

“Hi, Mandy.” My mom’s voice echoed in the background.

“Hi, Mom, what’s up?” I asked.

“Mandy, I need to tell you something.” Her voice cracked. And then the three words nobody wants to ever hear, “I have cancer.”

The rest is somewhat blurry as she filled me in on the details. As we hung up the phone I sat, staring at the wall behind my desk and all I could think was; my mom is going to die from cancer.

This was nineteen years ago and a time when all I knew was cancer was a death sentence. And although my mom is still with us, the way I felt when I heard she had cancer for the first time has never left my heart.

And each time one of us is diagnosed, the same feelings resurface. And as much as my family has dealt with cancer, it’s never easy to hear the words.

It was only a few short years after my mom’s cancer that my older brother, then twenty-six, called to share his results too.

“Well Manda, it’s colon cancer.” He said into the phone from Texas where he was stationed as a Captain in the Army.

Colon cancer? Isn’t that…for old people I thought?

Little did we know how untrue this would be.

Less than a year and a half later, on the heels of desperate pleas from my mom, I went in for a colonoscopy because her oncologist was suspicious that this could be genetic. In my foggy haze, I woke to hear my doctor say, “Go get her mom and bring them back in my office.”

I didn’t know what it meant but I knew it wasn’t good.

Although it wasn’t full-blown cancer, the large polyp in my colon was in the last stages of turning into cancer and thus, was treated as if it was cancer. Four surgeries, one deadly infection, an ileostomy bag (which I no longer have), shunts and tubes and drains throughout my body, and almost 30 days total over the course of the year in the hospital and only a few short months later I got another call from my mom…

“Honey…I have colon cancer.”

Hands down the toughest year, chemotherapy riddled my mom with pain so severe, she almost quit. But she made it.

And we thought the “cancer years” were behind us after that. We really did. Only a year later we received a phone call from my grandpa, my mom’s dad, and learn that he now had colon cancer.

And then my grandpa, again…bladder cancer.

And then my cousin, Becca, who’s passing on December 8th, 2013, ten short months after being diagnosed with cancer left so many hearts broken.

And then our dear friend Greg. My stepdad’s best friend, who was more like a brother, was diagnosed shortly after that and after three years of fighting, passed away last October 2017.

And then me. Metastatic Cancer of an Unknown Primary source. What does that even mean?

I lay this all out for you to see clearly not for you to feel sorry for us but so you can see why my family is exhausted... It’s been almost two decades of nothing but cancer.

So cancer, please, leave us alone.

But I know better. I know better to cry out such demands.

Because on Tuesday, September 25th I got a call…

“Mandy,” my mom’s voice, hard and stoic, “Honey, I have cancer again…”

So here we go, once again...

And we will keep you posted as she wins this battle too.

Because she's a warrior now.

She has no other choice.

Prayers and positive thoughts welcomed always.