Fast facts (if you don’t have time to read the full post): I would say 85% of the hair on my body is gone. We are right on schedule. Chemo is 48 hours away and I am trying to enjoy these final days exercising and eating all my favorite foods. It also has been 50 days since I started my blog and I am ~shook~ that I am where I am right now in my life timeline. Thanks for being here with me.

TO THE SHORT VERSION!

Unless you were my friend in high school, not my people know of my past life as a professional mermaid. Well that is a bit of an exaggeration. I was a chlorinated little punk swimmer, but same thing right? You wouldn’t have caught me admitting I was a great swimmer then, but now that I am probably terrible at swimming, I can tell you I was a fast little fish!

There was a secret tradition we all would do before a big meet like districts or state. We would shave ALL HAIRS OFF OUR BODIES. This seems like no big deal, but it meant shaving my arm hair and I always felt super weird about that. Did it really give me an advantage in the pool? I really have zero idea, but it was a bonding experience to shave my arms with the girls an hour before heading to the meet. It was a rite of passage. It was tradition. We would walk into the pool all slick and hairless, hoping that would help us glide faster and more seamlessly in the water. I swam my fastest 100 freestyle time my senior year at my last race at state. Was it because of my hairless arms? Probably not. But maybe…

Instead of paying $10 for some shaving cream and fancy razors, I now get charged over $5,000 (well my insurance gets charged hehe) per treatment to make me hairless. Chemo is the most expensive hair removal service I will ever experience and I used to pay to get laser hair removal! Most of my hair is gone, even my ear hairs and nose hairs! My nose feels all exposed and raw. My ears feel harder to clean now that I don’t have hairs holding the wax in place. I still have my arm hair though. I cannot believe I lost all of my other hairs before my arm hairs! They are the last hairs standing.

Being bald is actually kind of fun. You don’t realize how thrilling life is until a breeze grazes your tiny scalp hairs. It reminds me of menthol creams. It feels a little tingly and exciting. I also love that getting ready in the morning is a breeze. See what I did there? A wind pun! I hope it blew you away. *cackling* I still wash and condition my cue ball since I want to keep it moisturized and happy, but it doesn’t take much. I love having colorful hair, but I have embraced my baldy bad bitch lifestyle. Although I was forced to be this way, it actually is working out for me. Might as well enjoy this chapter in life, well as much as one can enjoy cancer. You don’t enjoy cancer, but you know what I mean.

Today’s song lyric of the day is brought to you by Cardi B.

“Oh I need the dollars, cha-ching (I said I like it like that)
Beat it up like piñatas (I said I like it like)
Tell the driver, close the curtains (I said I like it like that, skrt)
Bad bitch make him nervous (I said I like it)”

– I Like It – Dillon Francis Remix, Cardi B, Bad Bunny, J Balvin, Dillon Francis

Fast facts (if you don’t have time to read the full post): Welcome to chemo week! I have my third round of red devil chemo on Thursday morning at 10:15 am. I am officially over halfway done with the hardest part of chemotherapy! Yay me! But the sad part is that chemo compounds over time and I am starting to feel the effects. Rip.

TO THE LONG VERSION!

The version of me six months ago would have never imagined that my new favorite evening activity would be mixing up a fine ass strawberry milkshake… with Miralax. Why dissolve Miralax in water when you can blend it into your favorite dairy delight? I know some of you lactose free folks are over here cringing and holding your panties, but your girl here has zero problems with dairy fucking up her bowels, thus the Miralax. We do what we have to do on chemo to survive (and stay regular!) and that sometimes means milkshakes with a twist!

Milkshakes and other cold fun items also have been a blessing to my poor mouth. I have mouth sores hardcore right now! They kind of come and go, though. When I say mouth sores, some of you might be picturing some sort of festering hole of grossness. Or at least that is what I was picturing when I learned that mouth sores are a fun side effect of chemo. You know when your waiter sits down your favorite pizza and you see the steam coming off the greasy little bubbling cheese pores and you grab a slice and stick it in your hungry little mouth anyway? And then YOU BURN YOURSELF? It is a fast karma that is almost always worth it. Hot cheese is so fun. That is what my mouth sores feel like. They are burnt patches all over my gums and tongue and inner cheek meats. What makes matters worse is that they are in tricky spots and change throughout the day. And I am a bad cancer patient. I was told not to eat spicy food and probably avoid rough textured things when I am experiencing sores and yet…. I still am putting Ruffles on my sandwich for lunch and loading up my eggs with Cholula. This is probably why I have sores. I may never learn.

This weekend I decided to treat my sister to dinner as a thank you for taking care of my cancer ass. Let me tell you that it was my favorite meal I have eaten in 2022. I thought at first by saying that it might sound like the bar is super low given the fact that I have had parosmia for the past year, but you all know that I know what good food tastes like and a lot of my parosmia has faded away for the most part. I still have some major issues with some foods (selective cheeses, sour cream, coffee, chocolate, oranges, certain chickens and turkey meats, and both garlic and onions are still a little off), but I have had a lot of relief as of late. I have been dying to visit Dovetail Joint Restaurant in Richland and let me tell you, we feasted like the little queens we were and had a magical food experience. 10/10 recommend.

I am obsessed with food that provides a spiritual experience. Food is meant to connect folks together. It is storytelling. It is culture. It is an educational opportunity if you are willing to listen. It is one of the most enlightening experiences I think one can have when you choose to eat for a higher purpose than being fed. A lot of my eating habits right now are a means to survive, but when I get the chance to enjoy a meal that can enrich my soul and take me somewhere else, I take it. Our dinner at Dovetail was just that and it really was a treat to dine with someone who is just as passionate about food as I am.

We ordered the arancini and house charcuterie board for our starters. The arancini was a bold move on my end because so many of the ingredients in caponata have been unsafe with parosmia but I was pleasantly surprised when the experience was beyond pleasant and actually enjoyable! Also arancini is a blessing in this world. Who doesn’t like fried risotto and cheese?! Both my sister and I were confused at first about the charcuterie board since it didn’t come with cheese, but the menu clearly states “assorted cured meats.” I guess I need to learn to read, which is ironic given I work at a library. However, after exploring and building several meat, bread, and ground mustard piles we didn’t even miss the lack of cheese. Also, there were these little preserved apples to help cut some of the fat from the meats and let me tell you, that was the BEST part. I kindly asked my waiter if there was any way I could take some more of those apples home to finish off my leftover meats, but sadly they had run out. Cue tears. I dream of those little apple gems.

We fully enjoyed our prefunk appetizers and we were not disappointed with our meals either. My sister ordered their pasta and meatballs, while I enjoyed the house falafel on pita. Her pasta dish was creamy and rich and everything you want to satisfy you before lulling you to sleep. It was indeed magical. The pita was bigger than my bald head and it was like resting an angel’s pillow in your mouth. It had the chew you wanted, while caressing my little mouth sores. Falafel was bold in flavor and danced harmoniously with the hummus and other veg that decorated the pita. It came with some rather large slices of pepper which my mouth did not enjoy this time around, but I simply picked those off and had my perfect dish. We walked out feeling so happy and in need of naps.

I have to say, there are beautiful places to eat in the Tri-Cities and right now I am looking for every opportunity to eat food that makes me feel some type of way before the dreaded chemo tastes kick in. I do have a feeling if I can survive a year with parosmia (aka a year in food purgatory) I can survive a few months or however long with chemo tastes. I have experienced some shit with parosmia that has made me even more grateful and blessed when I can experience food properly. So much of my food for so long has tasted like rotten milk, dirt, orange cleaner, metal, even poop-esque that the blissful return of experiencing food as it really is has made my life fill with color. So here is your notice folks, take me out to dinner now before I get fucked again! Just kidding. But also, let’s eat.

I will note the one thing I have not tried with my updated parosmia is wine… I really hope it doesn’t taste like rotten milk. I cannot believe I worked at a winery for almost a whole year with parosmia and I couldn’t enjoy the wines! Just goes to show how talented and obsessed I am with wine… wink wink!

Today’s song lyric of the day is brought to you by 3OH!3 because you should never trust a fart when taking Miralax.

“T-tell your boyfriend if he says he’s got beef
That I’m a vegetarian and I ain’t fucking scared of him

She wants to touch me (whoa)
She wants to love me (whoa)
She’ll never leave me (whoa, whoa, oh, oh)

Don’t trust a ho
Never trust a ho
‘Cause a hoe won’t trust me”

– DONTTRUSTME, 3OH!3

Fast facts (if you don’t have time to read the full post): Today I had my first encounter with mood swings, caused by the chemically induced menopause I am now experiencing thanks to my hormone blocker. It was horrible. That word alone cannot capture the day in emotional hell I had. Also fuck bone pain. My bone pain is manifesting in my face right above my eyes and also in my knees, lower back, and right elbow. Can it be that specific?

TO THE LONG VERSION!

Menopause is here. It is not what I thought it would be. When I have heard of the phrase “mood swings” I had this idea that one moment you are sad about the burger commercial you saw on TV and the next you are raging about your neighbor’s lawn looking better than yours. It is like an on and off switch that feels quite binary and you can rationalize it and cope. But after experiencing my first one, it is nothing like that and there is no advice someone can give to prepare for one other than you have to just ride the wave, breathe, and let the emotion happen. It does not make sense. There is no on and off switch. You have no say in what is about to happen.

My first mood swing was fully triggered by the inability to order the hearty nine grain pancakes from Denny’s online. I literally could not find them on the menu. This admission makes me feel like a fucking three year old who is still learning how to manage their emotions. I couldn’t get them through their web page, UberEats, or Door Dash. I had already gone to Costco, was annoyed by how many people decided to show up at 9:30 am as me and my partner, and I was really hungry. Despite eating a protein shake before going to Costco, my body was already demanding more from me. It is a side effect of all the shit my body is experiencing right now. I literally can eat and then an hour later feel like I haven’t eaten for days. I probably would do well in an eating competition. Bring on the dancing hot dogs!

Once we realized I could not get the pancakes I desired as a pick up option, we decided we will just have to eat there. I could already feel the emotions piling up in my brain, but I had no idea what it meant. I just thought I was hangry. As Denny’s came into our horizon, we noticed there were people waiting in line to get in and instantly I realized my pancake dreams were crushed. I could not wait for my pancakes! That thought alone was bizarre since I was willing to wait to pick them up via curbside, but logic doesn’t exist here right now folks. The tears began to fall. My cheeks were hot with rage, but I was still perplexed in my brain why I was having such a strong emotional response to something I generally would move on from. I was literally having a conversation in my brain that was rational as my body decided to have an irrational response. By the time we got home, I was fully sobbing. I could not catch my breath. It felt like an anxiety attack mixed with learning about the loss of my dog passing away earlier this week and something…. else. It was sadness, it was confusion, it was something beyond anything I could comprehend. My body was eliciting this strong response and I was trapped in my brain wondering what the fuck was happening.

I called my mom. I had no idea who else I could call about this because none of it was making any sense to me. I didn’t want to scare my friends. How was it I could be so upset and feel nothing at all? I could not stop the tears, no matter how hard I tried. They were not my own. My words were hard to communicate. I did not understand what was happening. I was having a great day. My mental health has been relatively stable, despite the shit storm I currently live in so why was I so upset? Surely this could not be because of the pancakes?! THEY ARE JUST FLUFFY CARB VEHICLES.

Then it dawned on me: I was having a menopausal mood swing. I was devastated. DEVASTATED. I watched my body break down emotionally. It was physically exhausting. All I could do was sit on my floor and let the tears fall. I had zero control over myself despite being acutely aware of what was happening. In a span of 45 minutes, my body crashed and burned. Once I could compose myself, I ate and took a long three hour nap.

I have never felt more scared to live in my body than today. I though the cancer and constipation incident earlier this week was scary enough but I am now learning I have zero control over anything happening anymore. This is no longer my body. It is a war zone. My fully competent self is trapped in my brain box banging on the windows to escape. The inability to know when I will not be able to regulate my emotions properly is alarming. I cannot afford to have a breakdown like the one today at work or in any other public setting. Am I now a ticking time bomb waiting to explode? When is the next mood swing? Do I need to avoid pancakes for a long time? Is this response normal? I have so many questions about this menopause mood swing thing.

SOS. Send help!

Today’s song lyric of the day is brought to you by Alanis Morissette.

“My house is spotless, my lens is
Skewed, my limbs they recoil
And I’m folding in on myself
Since I am out of order

Call it what you want
‘Cause I don’t even care anymore
Call me what you want to
To make yourself comfortable”

– Diagnosis – Muhsinah Remix, Alanis Morissette

Fast facts (if you don’t have time to read the full post): This week, April 5 – April 11, is Adolescent and Young Adult (AYA) Cancer Awareness Week. This week was created to raise awareness about the unique challenges that AYA cancer survivors face each day and to show how their community can help. This group includes folks who are 15-39 years in age. This includes me (I am 29!)

TO THE LONG VERSION!

Pre-orders have officially closed for the “Fuck cancer! Enjoy rainbows!” stickers! 93 of you decided to pre-order 311 stickers! I thought I would get lucky to order 250 with some to spare! Holy crap you all are magical creatures in the world. I didn’t even know I knew 93 people, but I do! I know every single one of you that ordered. I am so grateful for all of you. Seriously. All donations will be going towards out of pocket expenses and my insurance deductible. The relief it gives me right now is immense and I am so incredibly grateful for all of you who have shown up in my darkest hour to make sure I live to blog and tell the tale how I slayed fucking breast cancer. I promise you that I will return this gratitude to you all someday soon and I will fight my hardest to enter remission so I can continue to decorate the world in colorful stickers (and do other things, probably.) That is my pledge to YOU. I will order a total of 350 stickers, so if you need a few extra or have a friend that missed the pre-order, I should be able to help you out!

I found it fitting that I accidentally coordinated the end of the pre-order sticker sales with Adolescent and Young Adult Cancer Awareness Week! According to the National Cancer Institute, about 70,000 young adults (AYA) (ages 15 to 39) are diagnosed with cancer each year in the United States, which accounts for about 5 percent of cancer diagnoses nationally. The most common AYA cancer types include lymphoma, leukemia, breast, colorectal, melanoma, cervical, thyroid, sarcomas, testicular, and brain.

It is clear that cancer does not discriminate, making cancer a challenging experience any time in life. But what I have heard over and over is that I am “too young” to have cancer. I know the sentiment is meant well, but cancer didn’t ask for my fucking I.D. Would it be more okay if I had cancer at 60 versus 29? Can one be an appropriate age to get cancer? I didn’t want it at 29. I don’t want it at 60. And if I am lucky to live to a riper age, I don’t want it then. We as a society have accepted that cancer and other chronic illnesses are the consequences of aging, so that when illness happens in youth, it is shocking and confusing. How can a body so young do something so stupid?! They are “too young!” But honestly, I don’t want this for any of us at any age. Cancer is so unfair. Just because you have lived life longer doesn’t mean it should be okay that it happens. Ultimately, we need a cure for cancer, but I digress because I am not a fucking doctor and I know I am probably preaching to the crowd. I hate that cancer fucking exists. HATE. IT.

So I am here to encourage new dialogue! When you encounter the young folk with cancer, let’s stray away from “You’re too young to have cancer!” because none of us at any age want cancer anyways and move towards, “That shit sucks. Let me help you fuck shit up! We ride at dawn!” Or if that is not your style, how about, “Cancer is stupid. I am here to support you on your journey. What does support look like for you at this time?” Ah, that feels better.

It is worth noting that there are unique challenges that come with a cancer diagnosis at a young age, thus the awareness of the week. I feel like that is strange to say after my rant of “cancer sucks at any age so let’s leave my youth out of it” but I think both of these thoughts can co-exist. We can acknowledge together that when cancer does impact someone young, they have a different experience than someone who is older. Some of the challenges I have seen reported in the AYA community include isolation, financial barriers (including access to insurance), fertility, sexuality and relationships, low enrollment in clinical trials, survivorship, and prevention and screening. I briefly want to just cover a few from my experience:

1. Isolation! Isolation is a big one and I know sometimes I have experienced it, regardless if it actually is happening or not. My friends’ lives are moving forward around me, while mine is not. I suddenly feel stuck and frozen in time. So many of my close friends are so incredibly supportive, but I am acutely aware of what is happening to me can be very unrelatable. I also sometimes experience isolation when receiving chemo. I am often the youngest in the ward, aside from the nurses. Several of them are also cancer thrivers/survivors, but it can feel like all eyes are on me when I make the dreaded walk to my chemo pod for treatment. I’ve gotten some weird looks in oncology. One guy was mad that my friend sat in his chair. Cancer makes us grumpy though, so we let it slide.
2. Financial issues! “Cancer is a matter of life or debt!” This might not be exclusive to AYA folks because our fucking healthcare system is WRECKED, but most AYAs have not established themselves financially. They may also not have health insurance or have aged out of their parent’s insurance. Many find themselves moving back in with parents or other loved ones, which can lead to feelings of shame and further isolation.
   • Luckily for me, I am stable in this moment and will be at least for the next year many thanks to state leave, my job, and everyone who has donated at this point to help alleviate some of my out of pocket costs. However, I have concerns that if my cancer has metastasized to my bones and is unresponsive to initial treatment that this may drastically impact my ability to work. So many folks have asked why I don’t just stop working so I can focus on treatment and healing, but fiscally that is not an option for my partner and I. We bought a home in 2020. I still have bills to pay because life doesn’t care about cancer. Capitalism is a bitch.
3. Infertility! Cancer can have life altering effects, which include issues with fertility. I have seen several AYAs report that fertility preservation was not adequately addressed in their treatment plan. And even when given the opportunity to discuss and explore, fertility preservation is is wildly expensive and not guaranteed. In my case, I was told to do it by my breast doctor and a week later was told I had no time to do it by my oncologist and that it would make my cancer worse. I will not know if I am able to have biological children until I turn 35, assuming I enter and remain in remission.
4. Clinical Trials! I am literally copying an pasting this from the Teen Cancer America site because I think what they said is better than how I can say it: “AYAs, age 15 – 39, get very aggressive and rare cancers and are seven times more likely to be diagnosed with cancer than anyone under the age of 15 according to the NCI’s SEER data. Although the statistics would point to this age group needing more research and clinical trial access, this demographic is still the lowest in enrollment. There is a major gap in the access to drugs and innovation between AYAs. An 18-year-old lower age limit for adult trials is causing the greatest barrier. There is also a significant delay in the opening of trials for some cancers that affect adolescents, with little improvement in outcomes observed over the last decade. Greater efforts are necessary to improve clinical research for AYAs with cancer.” Oof.
   • If you remember early on in my blog, I had the opportunity to participate in clinical research. I ended up not being a candidate because they were looking for folks diagnosed with ductal breast cancer, and I was diagnosed with lobular. I ended up deciding not to participate in the study before I learned I was no longer a candidate due to some of the risks of participating, but it was cool to know my oncologist is very progressive and interested in moving science along. Someday I will end up in a study and contribute to science! It is my GOAL!

I think I could write a whole thesis on this topic because there is a lot we could cover here, but I think for now this is a good stopping point. What I hope you all take away from this post and this week is it’s clear that AYAs need special consideration and care. They also must be advocates for themselves and I am actively learning to be more assertive in my appointments and ask questions, no matter how small. All of you can play a role in raising awareness and being catalysts for change for future AYAs. After all, you all know at least one now!

Here’s to the AYAs. Fuck cancer!

Today’s song lyric of the day is brought to you by JAY-Z.

“Reminisce, talk some shit, forever young is in your mind
Leave a mark that can’t erase, neither space nor time
So when the director yells cut we’ll be fine, ah
Sing”

– Young Forever, Jay-Z, Mr. Hudson

Fast facts (if you don’t have time to read the full post): The last three days have been a ROLLER COASTER and I am sorry I ghosted you all. I had zero capacity to share any thoughts. But, I am back, and I am a bald bitch with dark stories to share! LET’S RAGE. Also today’s trigger warnings: discussing the loss of a pet and talking about bodily functions. Please read with caution and be gentle on your heart.

TO THE LONG VERSION!

Fuck. That is the only word I want to say.

The problem with today’s blog post is I don’t even know where to begin. I missed three days of sharing!!!! I have experienced a million emotions in the last 48 hours. Feelings I didn’t even know the human body could experience all at once. That sounds really dumb to say out loud. I feel incredibly devastated and numb. My body is currently wrecked, but not for the reasons you would think. I am surprisingly doing well after my second round of red devil deliciousness. I am functional. My side effects have been nothing compared to the first round of chemo, which is very confusing for me. Why am I not more sick? Is there something more sinister brewing in the universe? The answer that echoes back is, “Yes, bitch. Let’s test how strong you really fucking are!!!” And I learning I am quite weak, in fact.

So the universe decided in a single hand punch to the face to make me incredibly constipated to the point that I thought I was going to die, forced me to shave my head in search of relief while having my first chemically induced menopausal hot flash, and killed my dog. All in one day. Damn, the world wanted me to feel something yesterday. I felt it alright.

Let’s break this shit down. I know some of you are like, “Wait, what the fuck?” This post is not for the weak of heart. Also we are talking about poop today, so suck it up. Everyone poops. And if you don’t, I can hook you up with some Miralax.

Let’s start with the fact that I am (was?) feeling okay almost a week post chemo. I mean, I have been tired but nothing compared to last time. I kept most of my brain this time around, which has been nice. I enjoy having free thoughts. I noted they gave me extra fluids during my appointment, which I genuinely attribute to why I am doing so well. But they also gave me a hormone blocker and a growth factor injection. I massively underestimated what those shots do.

They make you constipated.

As someone who prides themselves on having a great healthy poop schedule, I really have brushed this side effect off thinking it would not be something I would deal with. Big mistake. As of yesterday, it had been several days since I had a good poop in my book. I was becoming ~concerned.~ I knew something was off. I also was planning to shave my head yesterday. The fall out has been unreal and actually really uncomfortable. The act of your hair falling out is just a weird devastating incident on its own and then you combine that with the fact that your hair follicles BURN and I wanted nothing more than to shave my damn head.

But before I could even begin my day yesterday, I found out my dog had unexpectedly passed away. My beautiful, sweet Ruby doobie. The dog who would lay on my chest, all 80 pounds of her, and softly give me kisses on my cheek. My sweet friend with the softest ears. My last dog alive in my family. She was going to turn ten this year. She had suffered a fall on the steps (bad hips!) and then come to find out she had kidney failure and a possible brain tumor. Like what the actual fuck? The world can be cruel at times. I wish animals could live forever. Animals nourish the world. My heart feels shattered. So my day started off fucked. I should have stayed home.

The afternoon rolls around. My stomach is feeling some type of way. My emotions are fried. I cried enough tears to fill all the oceans. I had scheduled the shave of my life at 5 pm, but the world had other plans. By 3 pm, I was the princess of toilet town. I could not leave my tiny ill lit bathroom and Squatty Potty. By 4:30 pm, my mom and sister arrived ready to take me to get shaved at the salon and I realized I could not sit normally. I barely could stand, let alone walk! I looked like a very distressed penguin waddling about my living room. I would not be able to make a trip across town in the condition I was in. I had decided at this point that I would need to survive one more day with disgusting hair if it meant figuring out what the heck was happening in my butt hole. So the evening dragged on. I chugged prune juice. I drank Miralax. My body was no longer my body. I was a prisoner of chemo hell trapped in my bathroom with petroleum jelly, my phone charger, and the desire to die. That is how intense my evening was. I had convinced myself that my poop was going to kill me, not my cancer. Yikes.

Despite missing my salon shave, my hair dresser blessed me with a house call at 8 pm. Unfortunately, I was so disoriented (again, another hair incident where I am OUT OF IT) and of course my body decided it should have its first chemically induced menopausal reaction and produce a wicked hot flash that I don’t remember much of what happened to me. I remember almost blacking out. I remember I couldn’t hear very well. I remember tears of relief and rage and confusion. My poop issues ruined my moment of fucking dignity.

The party was far from over for me. I was now a sad, little bald cancer bitch on a mission to poop while having a hot flash and sweating everywhere. Two of my best friends were messaging me and they stepped in at my darkest hour. One of them showed up at 9:30 pm with an enema and a pep talk. She was not going to let me die on my bathroom floor. No, not tonight. So since I probably need to chill it with this harrowing story (and what happened next is something you can use your imagination for) I will let you know that by 11 pm I had showered and had done something I never thought I would ever have the courage to do in my life and I am feeling a lot better today but holy fucking shit… my back hurts. My body is wrecked. I am so tired simply from trying to do what my body needed to do. And my butt hurts. Please pray and send positive healing energies to my butt.

I am pretty sure if you made it this far, you want to never read a blog post I ever write again. I am sorry. However, I swore to myself if I blogged about my journey, I would blog about what is really happening to me and honestly this happened to me. These are the REAL and RAW things that cancer patients are dealing with. Or, at least I am dealing with them. Loss. Pain. Betrayal. I am weak today (and now officially bald!) and yesterday was a horrific day on so many levels, but I am alive.

I am so grateful to be alive.

Today’s song lyric of the day is brought to you by Noah Reid, dedicated to my Ruby.

“You’re simply the best
Better than all the rest
Better than anyone
Anyone I’ve ever met”

– Simply the Best (From “Schitt’s Creek), Noah Reid

Fast facts (if you don’t have time to read the full post): We are on LAST CALL for “Fuck cancer! Enjoy rainbows!” glitter rainbow stickers! I am closing the pre-order form on Wednesday, April 6. We have sold over 275 stickers so far. Holy fuck, you delightful humans who hate cancer. You are all so sensational. Click here to order your stickers. I am also losing my hair in large quantities now. This is the week we will have to shave my head. Fuck.

TO THE LONG VERSION!

It shouldn’t feel cathartic to pull my hair out in the wind, but it is. Teal, yellow, pink, and purple hairs decorate my front lawn, waiting to be whisked away like dandelion seeds. Maybe they will make nice insulation for a squirrel’s nest? I can only dream! That nest will be the coolest one in the tree, that is for sure. Letting the wind pull my hair out was an easier experience for me to endure than the shower I took this afternoon. Little clumps of hair hung off my body and my comb. I mourned a portion of my identity laying in the bathroom trash can. I held myself a little pity party in private. The tears tasted of rage and grief. I can only cry so much over this cancer thing. It only keeps demanding more sacrifices from me. When will what I give be enough for remission? Will I walk out of this experience alive?

I have this irrational fear that nobody will recognize me without my hair. I will cease to exist without rainbow hair. Like I said, it is an irrational fear and makes zero sense. I am still me without my hair, right? Yes? I think? So much of how I have chosen to express myself and my identity has been with my hair. It has changed with the seasons in my life, reflecting the changes of who I am and who I wish to be. I have become bolder, louder, more unapologetic. Having cool hair has made me feel empowered, kinder, unstoppable. I love the freedom it has given me to live my most authentic self. I have a box of awesome turbans and wigs, but they feel like a weird band aid. You can have my butt hairs, chemo. I don’t need those. I just want the hair on my head. Is that too much to ask? I guess so, fucking cancer. You fun sucking bitch.

Despite all the preparation I have done to come to terms with losing my hair, watching it fall out is still painful. It angers me how quickly it releases from my scalp. Even the texture has shifted. You would think that I have never conditioned my hair a day in my life and you all know I am obsessed with my hair care regime! I am dreading shaving my head because it means giving in to chemo, but I also want to be relieved of seeing bits and pieces of me all over my clothes. This is not the kind of confetti I like.

Being bald isn’t forever, but I also don’t know when I will have hair again. I have to be bald all fucking summer! Hot girl summer? More like bald girl summer. Even when my hair does start to return, it will be thin and most likely curly or even a different color. Someone said when my hair starts to grow back, it will feel like little duck butt hairs. Instead of my party trick being you all feeling up my breast tumor, you can feel my duck butt head. Less scary and probably a lot softer.

Today’s song lyric of the day is brought to you by Disclosure.

“Wasted
Don’t know which way you’re facing
You can’t hold on
You’ve got to let go if you want to be free”

– You’ve Got To Let Go If You Want To Be Free, Disclosure, Zedd

Fast facts (if you don’t have time to read the full post): Looks like my parosmia is not really gone. I celebrated one year with parosmia last week. How the fuck I have made it this long with this stupid issue is beyond me. Lots of things have changed for the better, but it is clear my olfactory nerves are not 100% healed. I am two days post chemo and I am feeling significantly better than the first round of chemo. Sus. Also my hair on my head is shedding faster. I am starting to feel some type of way about that.

TO THE LONG VERSION!

On December 15, 2020, I went to work and by 11 am I went home because I noticed one of my nostrils was plugged up. The little alert bells in my brain were going off. I slept most of the day, woke up, and prepared myself jalepeño mac and cheese for dinner. I could not taste it at all. Uh oh. At that point, I knew I had fucking caught COVID-19. By Thursday, my results came back and I was confirmed positive. I lost my complete smell and taste, was extremely fatigued, had extreme bone pain in my hips and back, and overall felt like a piece of shit. I celebrated Christmas alone in my house with my cat. People dropped off tamales and pozole, pho, and other wonderful treats and I could not taste a damn thing. I waved to friends and family through the window as we talked on the phone. I cried a lot. Quarantine was depressing and isolating. It was one of the worst 10 days of my life (up until now.)

I felt extreme shame for contracting COVID. I had done almost everything right. I wore masks religiously. I sanitized my hands. I was social distancing. And today, for the first time in a year and a half I am going to openly admit to you all where I contracted it. I told everyone around me that I had no idea how I got it, but I knew. I was so ashamed. I still am. And honestly, I am really scared to tell you all this since I have lied for a really long time about it. Part of the reason I kept it a secret was because when I got sick, my mom had just started her battle with stage three HPV throat cancer. I felt so much guilt that I had caught COVID and she was fighting for her life. I couldn’t see her. It was devastating to miss almost a month of her initial treatments because I couldn’t risk being around her.

This blog feels like a Catholic confessional box right now and I am not even Catholic nor have I ever confessed but here we are.

December 15 was a Tuesday. Three days prior, I went to BodyPump at the gym and was maskless in class for the first time. I should have stayed fucking masked but no I was an idiot. I just had to go to the gym. Someone had come to class and was sick (I didn’t know until later that they were) and I got infected. Fuck. Me. Now you all know my deepest, darkest secret. I hope you don’t hate me for lying for so long. And if you do, I deserve it.

I carry that regret with me every fucking day. It weighs so heavy on me. Not only did I miss critical time caring for my mom during her darkest hours, contracting COVID completely changed my life. I’ve been a long hauler for almost a year and a half at this point. I struggled with COVID brain fog for months and long term fatigue. I was completely anosmic (loss of smell) for two and a half months before parosmia settled in. Parosmia has made eating a challenge, as many of you close to me know. Early on in my parosmia, most foods tasted like rotten milk, sewage, orange cleaner, overly acidic, or sometimes I couldn’t identify what they tasted like so I just referred to it as the “COVID” smell.

So much has shifted with my parosmia it has been incredible. I had reported after my first chemo that some of my most triggering foods tasted normal: lettuce, beef, onions and garlic, and cold brew coffee. I literally thought for a day that chemo cured my parosmia! I spoke too soon. Beef seems to be unchanged as of today and I am finally able to enjoy chicken nuggets (yay!), but coffee and lettuce are still presenting weirdly. Last night, I went to prepare myself a grilled cheese and cheddar is back to tasting like rotten milk. *Sigh* I am supposed to be eating better during my treatment, but I am at the mercy of my parosmia at this point. I just try to eat whatever my body will allow me to eat. It is fucking exhausting to have cancer and parosmia at the same time. Every hour is unpredictable. And I fucking LOVE food. Eating is one of my favorite hobbies. I pride myself on knowing where the best tacos are in town. I am a wine snob. Bread (good bread!) and fancy cheeses are my favorite foods. Parosmia has robbed me of one of my greatest joys and I have only myself to blame.

I can’t help but wonder sometimes if there is a connection between contracting COVID and now my sudden onset of very aggressive cancer. I am not a conspiracy theorist. I believe heavily in science. There is currently no evidence that is saying what is happening is because of COVID but sometimes my brain wanders. There are many unknowns surrounding COVID and the damage it can do long term. I’ve been eating what I view as poorly over the last year and a half. I normally have way more veggies in my diet, but most veggies have been off limits thanks to parosmia. I’ve done everything I can to care for my body, but sometimes genetics are stronger than the health we can control I guess.

Fuck you BRCA1. Fuck you COVID.

You can learn more about my experience with parosmia here, here, and here.

By now you might have noticed I have a very eclectic taste in music. I am the product of all the cool people in my life who have introduced me to amazing music over the years. Today’s song lyric of the day is brought to you by Eminem because I had to give credit where credit is due for today’s blog post title.

“Testing attention please
Feel the tension soon as someone mentions me
Here’s my ten cents, my two cents is free
A nuisance, who sent, you sent for me?”

– Without Me, Eminem

Fast facts (if you don’t have time to read the full post): As of this afternoon, 205 “Fuck cancer! Enjoy rainbows!” stickers have been pre-ordered! I am seriously blown away by the support. Seriously, why are all of you so kick ass? So glad we all hate cancer together! Click HERE to order one! I will leave the pre-order form open for another week before closing it to order stickers and ship them. I had my second growth factor injection today. That injection will help in the production of “healthy” white blood cells. I should be needle and appointment free until my third round of chemo on Thursday, April 14. Yay!

TO THE LONG VERSION!

“I really wish that cancer responded positively to aggressive online bullying. I’d be sliding into those DMs like, “Hey round boi, I saw you on that stupid MRI you posted. You think you’re sooo metastasized. Lol. Literally no one likes you. I know you’re really attached to Madison, but the truth is she hates you. So if you and your two idiotic, estrogen munching, lump friends think you’re so fucking deadly you should just unalive yourself now and save us the hassle of your pathetic existence.” – A wonderful rant from a wonderful friend about the potential spread of my cancer.

Why are you all so amazing? Seriously. Here I am, just hanging out in cancer hell and you are all with me at all times of the day, cheering me on in my little glass box as I duel it out. I will still never understand how I got so lucky in my life to be surrounded by so many people who are down to punch cancer in the fucking face. All cancer is stupid and I sure hope someday there is a cure because fuck this shit.

Today has been a day of rest and I am surprisingly having a good day? I would say on a scale of one to awful, I am a .5. No major side effects ~yet.~ I have to wonder if it is because I received extra fluids after chemo yesterday. My nurse was like, “How is your heart? Any heart problems?” I told her not and she was like, “Well, you have half of bag of saline left. I want to put it on the highest setting and give you extra fluids and get you out of here.” I was down. I only peed red yesterday, so I think those extra fluids kicked chemo out of my body early. Just a theory! The bruise I have on my stomach from my hormone blocker shot yesterday is gross. It is all purple-y and wonky. That needle was a BIG ASS BEAST. I didn’t see it, but everyone else did. Cringe. As if one not sending me into chemically induced menopause for the next five years was not enough, I had to get a second stomach shot today. Luckily this shot went better than the first and hurt less but literally my tummy is so unhappy right now. I am a bruised up sad little bitch.

Speaking of my hormone blocker, today is April Fools Day. Joke for you: When it is April Fools Day but your life is already a joke. Sorry I had to for me! I laugh. On a different note: It is NEVER OKAY to post a fake pregnancy joke on this day or any day for that matter. Struggling with infertility is not a joke and can be harmful to your friends and family. I know all of you reading this are respective human beings and wouldn’t dream of posting it, but after receiving my first hormone blocker, I realized there is a very real chance I may never be able to have children. No mini Madison’s?! So sad. Despite not knowing if I wanted to or not, having the choice potentially removed from me is a really painful thought. I will have zero idea how fertile I am until five years from now. And on top of that, I have to contemplate that having children means potentially passing on the BRCA1 gene. There was no time for me to organize fertility preservation with my aggressive cancer and it has left me feeling quite traumatized in a way that I am still actively processing.

Cancer is a never ending grief process.

Today’s song lyric of the day is brought to you by Mark Ronson.

“I weigh the water, I feel it all
I ask myself a million questions in the dark
I lay in silence, but silence talks
It tells me heaven is no closer than it was”

– Late Night Feelings (feat. Lykke Li), Mark Ronson

Fast facts (if you don’t have time to read the full post:) Today was my second round of chemo. This also marks the halfway point with the red devil! Woo! I received my first hormone blocker injection in my stomach (RIP!) and I also met with my oncologist and got answers about my MRI results. I hope you saw the pun in today’s title. Do-si-do. Chemo round dos. A very clever English/Spanish dancing pun. Heh.

TO THE LONG VERSION!

Hellloooo! Literally writing this from comfy little chemo pod #22 in angelic hell! Not sure why the wi-fi is better in the middle pod, but whatever. I will take it! Okay, this is going to sound weird but I really like going to chemo. The act of getting chemo is depressing and what comes after is like FUCKING AWFUL for three to five business days, but I like going. The nurses are so great. The staff are becoming my friends. Peep the “Do your dooooody!” limited edition cup that my friend who works here brought me. Cute lil poop emoji. #BlessedAF. The patients are pretty rad, too! There was a guy here today handing out ice cream bars to everyone. Like how fucking delightful! And the snacks are pretty decent. They have name brand snacks and cranberry grape juice (the ULTIMATE blend!) in the cute single serve cups! I stole an oatmeal and peach nutritional drink for later. I mean it isn’t really stealing since I am paying up the ass to get poison injected into me, but I like to think that the act of taking more than two things from the snack bar is a sin. Let me relish in my fake greed! Muhahaha.

This morning, I woke up and accepted that my cancer is an asshole and enjoys traveling. It has free sky miles to use I guess. I realized that I can do nothing at this point other than do the things my oncologist tells me to do and hope for the best. So that is my plan. I did my leg day (yay for feeling well enough for exercise!), ate a massive cancer fighting breakfast (just kidding it was french toast, homemade hashbrowns, and eggs) and watched an episode of Bridgerton in preparation for this afternoon. I had a great fucking morning all things considered.

“What questions do you have for me today,” my oncologist asked me when she walked in. I felt like that was a silly question. Like you saw my scan right? You know I am a scared little bitch. But I kept my cool and told her in my least anxious voice that I wanted to discuss my MRI results. So folks here is the deal. She agrees with the MRI doctor dude that yes, the lesions in my scans look ~very concerning~ for metastatic disease aka cancer. However, the “biggest” lesion is too small to biopsy so she is recommending we continue with treatment as planned. If they are indeed cancerous (oh yeah… there is more than one but the others are specks), those little round bois will get obliterated during chemo. Chemo can take the lesion back to hell with it! If they are not, we will have to address them once I finish treatment.

Cancer can fuck off. Plz and thanks.

Today also had other surprises in store for me. I walked into chemo and my nurse was like, “Oh so you’re cleared to get your first hormone blocker shot today!” and I was like oh no. Another surprise needle. Such joy. And it is a scary needle but it is a subcutaneous injection so YAY FUCKING ME. They grabbed the best nurse to administer the injection, bundled up my stomach fat, sprayed me with the numbing spray, and stabbed me in my chemo chair. It was quite an event. It was not pleasant, but I would say it is doable in the grand scheme of things I have to do to survive cancer. Do I like the fact that I will be getting a shot like that monthly for the next five years and be stuck in chemically induced menopause? Fuck no. But I have no choice.

So, the next five days are going to suck. And I am going to lose my glorious hair by next week so I am SO FUCKING SAD. I am going to be a shell of myself and then I will emerge from the depths of the pits of the earth having slayed the red devil once more. Annnnnd do it all again. Bald.

OH! One final note! Pre-orders are now open for the “Fuck cancer! Enjoy rainbows!” stickers. You know you want one. Click HERE to order one!

Today’s song lyric of the day is brought to you by Rage Against the Machine. This is the song stuck in my head as I got injected with the red stupidity today.

“Weapons not food, not homes, not shoes
Not need, just feed the war cannibal animal
I walk tha corner to tha rubble that used to be a library
Line up to tha mind cemetery now”

– Bulls On Parade, Rage Against the Machine

Fast facts (if you don’t have time to read the full post: Today I had an MRI for my spine because my bone scans showed some sketchy round bois hanging out in my vertebrae. I have my results in my chart, but I have not had a chance to talk to my oncologist about them. The results are…. not great. I also have my second round of red devil chemo tomorrow afternoon at 3:15 pm. That will last 2.5 hours.

TO THE LONG VERSION!

Whatever I am about to share with you, please do not Google anything. We are not panicking yet. We are simply bracing for impact. Well, I am bracing for impact and you are observing and probably feel very similarly. We are on a rocket ship headed for disaster! Abort mission! I have chosen to share this with you all now instead of waiting until I learn more because this blog is a reflection of what is happening to me in real time. The emotions and stories shared here are a direct reflection of my lived experience. What happened today is just that and I don’t think waiting 24 hours to learn more makes a difference in how I end up sharing it anyways.

My chart read the following after the MRI on my spine: “A 1.4×1.6cm lesion within the L1 vertebral body that is concerning for metastatic disease. There are other scattered tiny punctate areas of enhancement seen within the lumbar spine that are concerning for metastatic disease.”

You will not Google. I will not Google. Swear to me you will not Google. But what this is saying is that my cancer has spread to my spine. I am hoping… praying to whatever the fuck is in the universe… all the things right now that this is NOT the case. The MRI dude’s interpretation has to be wrong!

What the fuck is fucking happening. Fuck. Fuck. FUCK. F U C K.

It is hard not to feel like I will die now. Here I was today, having a great fucking day, telling myself I can do another round of red devil chemo and survive it and that honestly is the least of my problems now. There could be cancer elsewhere. And it is not like I can cut off my spine the same way I can cut off my boobs and remove my asshole lymph nodes. I need my spine! Why the spine! I mean, I need my boobs too but I have decided that if they have to go, they have to go. But my spine??? It is not like I can get a new fucking spine on eBay.

Cancer is Murphy’s Law: anything that can go wrong, will go wrong. I should have kept this in my back of my fucking mind before I opened my stupid chart this morning. I had too much confidence. Okay, so there is a chance still that it could not be cancer, but it is looking pretty bleak with my results.

I am dying to know (lol morbid pun?) what this means for me if it is indeed cancer that has spread. Will I require a spine biopsy? Can my body even handle that right now? Will this change chemo treatment? Will I need more chemo? Different chemo? Longer chemo? Do I go from “curative” to “palliative”? Will I have cancer forever? Will I die?

I don’t want to die.

Now that we have that emo fucking news out of the way, I wanted to share a happy story that made me cry tears of love and deep appreciation. I realize that was a hard pivot and I am really sorry, but we need to end this on some sort of happy note because I know none of us are going to sleep well this evening with this pending doom news.

A good friend of mine took me out to dinner last night to PROOF in Kennewick. It was a lovely dinner. I have been told multiple times that I should not be eating spicy food, but like I love a good burn and like to ignore rules sometimes. I picked the Nashville fried chicken sandwich (delish!) and some sweet potato tots. No regrets! When it was time to ask our waitress for our check she told us that someone had covered our tab for the evening. Um… what? She goes, “It appears you have some sort of guardian angel. They said they knew you and wanted to make sure you were taken care of for the evening.” Guardian angel. The waitress had no idea how much those words hit my heart. My friend and I look at each and burst into tears. It was an unexpected way to end the evening.

I am generally a pretty observant person, so I was surprised I didn’t see the person who knew me leave. I am guessing I know you too? I wish you would have said hi and I wish I knew who you were so I could thank you and hug you. If you are reading this, your act of generosity really hit hard.

I continue to be so insanely blessed by so many of you. From small acts of kindness like texts and calls to random gifts and cards in the mail and dinners, your kindness does not go unnoticed. I am having a hard time with the language that fully captures how deeply loved I feel right now. Thank you so much for giving me that spark of hope in this insanely hellish moment in my life. I don’t know how I can repay you all for what you’re giving or have given to me.

Today’s song lyric of the day is brought to you by Daniel Powter.

“Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me, “don’t lie”
You work at a smile, and you go for a ride
You had a bad day”

– Bad Day, Daniel Powter