Fast facts (if you don’t have time to read the full post): Happy International Women’s Day! I had five very significant cry sessions today and two very intense but invigorating Zoom sessions for work. One was our quarterly DEI training and the other was for the Tri-Cities Latino Community Network. We hosted a panel of inspiring women in our community to share their stories and wisdom with us all. My soul both feels both tired and nourished. I also saw that my genetic results are back and being reviewed by my genetic counselor. I should know ~very soon~ my BRCA fate.

TO THE LONG VERSION!

I love celebrating International Women’s Day. It is a statement of fact that I am surrounded by so many empowering women who nourish my soul, who inspire me to be more, who are changing the world simply by existing and #BreakingTheBias. What power they have. I wish I had the energy to text every single woman today in my life to tell them how much they mean to me and how much they have changed and shaped me. If there is a woman (or women!!!) in your life you admire deeply, please text them right now. Don’t wait until after this blog post because you might forget. Stop. Grab your phone. Send the texts. Tell them how much you love them.

Welcome back!

Did you know about 1 in 8 U.S. women (about 13%) will develop invasive breast cancer over the course of her lifetime? Yup! I guess I am now that one friend you know in that statistic. According to Breastcancer.org, “Breast cancer is the most commonly diagnosed cancer among American women. In 2021, it’s estimated that about 30% of newly diagnosed cancers in women will be breast cancers.” A little fun fact for you. That site has tons of facts! Some make me really sad and some are inspiring me to write a whole ass blog post about the disparities and racial inequities in our healthcare system. That is going to be something I need more time to research and digest and will save that for later but just wanted to warn you all. It is coming. If you have not taken the time to consider how people of color experience healthcare differently than white folks, I urge you to maybe start a Google search on your own and then you can deep dive with me when I share that future post. There are inequities in the healthcare system as it relates to women in general don’t get me wrong, but how a woman of color or even how a trans woman experiences healthcare is something that everyone needs to be aware of. If this paragraph makes you uncomfortable, please sit with that for a second and try to ask yourself why. I want to call you into this conversation, not call you out. All learning levels are welcome here. Click here for a great jumping off point to learn more about a future post I have yet to write!

Speaking of women and things that make me uncomfortable, I had a really touching comment this morning from a wonderful friend who read yesterday’s “The Helper” blog post and I wanted to share a portion of it with you all because I figured if it helped me reframe how I think about accepting help, then it might help one of you, too! I know I have lots of helper type friends (aka the enneagram 2!) so here are some words of wisdom from a very wise woman (shared with permission):

“The hardest thing for helpers to do is to receive help. I hope you can realize that you are helping all of us by giving us stuff to do for you. You help us feel useful. You help us feel like we are needed and wanted. You help us know that we matter and make some sort of difference in this whole fucking mess of things! (See, the Mormon girl is cussing!) So help us by telling us how to help you. Help us by letting us show up for you in ANY way that you need or want.”

That was my first cry of the day. It was not a bad cry but a cry of release. I wrote that post yesterday from a very selfish perspective. It is selfish in a way to deny friends and family the opportunity to support me on this journey because ultimately I am the one that has to take this beating of a treatment. I am the one that will be injected with poison and roasted by the lasers. Everyone will watch and stand by and wish that pain could be taken away from me. The only gift I can give others during this time is the opportunity to maybe do something for me that in effort is small but large in impact. And I love giving gifts! So here is my moment to reframe and adjust my approach and realize that giving you the ability to give to me is a two way street and we all what we need and give what we want.

The other four cries of the day were a bit more intense. Right now I am measuring the success of my day in my tears. Let me clarify and say that there is NOTHING WRONG with crying. Crying is my new metric for evaluating how emotional my day was and today I had a hard day. I am on this emotional roller coaster in my body. I am also off birth control for the first time in 14 years so my body is probably like WTF!? I miss the regularity that birth control pills gifted me. I was really lucky in that regard.

My other cries are of things out of my control at this time. I am scared of receiving treatment. I am scared that my genetic results could come back as BRCA1 and 2 positive, making me feel extra fucked. (Note: I am okay with being BRCA1 or BRCA2 positive because this would explain my cancer diagnosis and inform treatment, but I am NOT okay with being both lol.) I am paranoid that every ache and pain that is located beyond my port or my right breast means the cancer has spread. My anxiety is off the charts. Cue deep breaths. I had my coworker examine my collar bone and my port today to make sure things felt and looked okay. I mean, she is no doctor but she knows some shit. This is a torturous week for me as I wait to take my CT scan and bone scan on Friday. Those scans will either clear me of cancer elsewhere in my body or it will show my deepest darkest fears of cancer fucking shit up. To find out what is happening internally, I get injected with some stuff to make me light up like a Christmas tree. I am going to be lit af, just not off rum which is how I prefer to be lit. Side note, I Googled “What do you get injected with for a CT scan?” and I found a very scientific answer and then someone had also asked if you could see poop in a CT scan. There’s no such thing as a stupid question. Google is so great.

Today’s song lyric of the day is brought to you by Emmy Meli in honor of International Women’s Day. ❤

“I am woman, I am fearless
I am sexy, I’m divine
I’m unbeatable, I’m creative
Honey, you can get in line”

– I Am Woman, Emmy Meli

Fast facts (if you don’t have time to read the full post): Two people came up with names for my SuperPort: Party Port and Harry Porter. I love my friends so much. I have no idea which one to pick. Both are excellent. My port feels a bit more settled today. Breathing doesn’t hurt anymore. I was able to go for TWO WALKS today! Hooray! I am leaning into things that make me uncomfortable because I am going to be very uncomfortable for a long time.

TO THE LONG VERSION!

“Are you resisting closeness? Today, there’s a little voice in your head telling you that it is selfish to get what you need. It’s not. You just need to learn that you need to listen when people express uncomfortable feelings and needs. Take it slow. Don’t put your finger in every pie.” Ooof. This is my horoscope today on the Co-Star app. I am dying at the accuracy. I also do enjoy sticking my finger in every pie, both figuratively and literally. Who doesn’t love pie????

Having cancer is the ultimate test as an enneagram 2. I am a helper. I don’t ask for help, despite acts of service being my receiving love language. I am a walking contradiction. Helping and serving others makes me feel loved and valued in every way. I love being dependable and the friend you can call when you’re in need. What I hate is NOT being available or helpful to others. Cancer is literally making me unavailable for like the next six months. That is like two of my worst nightmares at once! Being in this situation has put me in an uncomfortable position with family and friends. So many want to give to ME, to help ME, to clean my cat boxes for ME. The urge to resist and say, “No worries, I am fine” is VERY strong for me. I am still working through why I view me needing help as a weakness because when I know others need help I never see them as weak. They just need a little help. So why do I feel weak?

“There’s a little voice in your head telling you that it is selfish to get what you need. It’s not.” Again, this app is not wrong but everything in me is competing against this. It feels selfish to call upon my community of loved ones because I recognize so many of you (including myself) have been tapped out by the pandemic, by life, by the never ending social injustices in the world, by simply trying to survive in this world. Things have been tough for so many and then now things are about to get a gazillion times harder for me and I just don’t want to put people in a position where they have to give more than they have. Cancer feels like a burden and I hate that it feels like I am giving it away when I talk about it or ask for help. I don’t want to burden anyone. And yet… I think about last winter when my mom was going through her cancer treatment. It was the burden I wanted to hold when my mom was struggling so she wouldn’t carry it alone. I didn’t even want her to have to carry it if it meant I could. I keep trying to think about that for me since I am now on the other side, but it doesn’t make any of this emotional processing easier.

On Saturday night, I was alone and in a ton of discomfort and pain from my surgery. I pushed myself too hard during the day and I came home to being completely out of dry cat food and the cats were very hangry. I didn’t want my cats to plot my death in the night so I was like shit I gotta get some food! It was almost 9 pm at night and I knew if I left I would be disoriented. I was torn between laying on the floor of Fred Meyers or asking a friend if she could get some dry food for the cats and sending money over Venmo. I literally agonized over this decision for like 15 minutes before I texted my friend for help. WHY IS MAKING A CHOICE LIKE THAT SO HARD FOR ME? My friend wanted to help me before I knew it, she was at my house with the cat food and she saved the day. I lived another day and was not eaten alive by my cats. And the help didn’t kill me, just my pride a little bit. My ego will recovery, I think.

I tried to sit with that discomfort on Saturday. People around me care about me and want me to win. They want me to live. And sometimes in moments like this (with this dumb cancer thing) there is nothing to do for me other than help me buy cat food. I have to be okay with that. I am trying to be okay with that. I hate that I might lose some of my autonomy for a short amount of time. The care giver in me that I use for others will be trying to care for me. I can’t help others if I am in the ground, right? But I bet if I did die, I would be a really helpful ghost. I would show you signs and symbols and life secrets. I might even visit you in your dreams or haunt the houses of your enemies for you. I would be an excellent ghosty friend.

BUT. I cannot die. I don’t feel like being a ghost right now so let’s not even go there.

On a lighter note, only two of you commented about naming my SuperPort. It’s okay, I know some of you are social media shy. It has come down to “Harry Porter” and “Party Port.” Super Porty Bros? Harry Porter and the Party Port? Harry Party Porter? Party Porter? Harry Porter and the Prisoner of Cancerban? We have options people! Let’s try to sort this out this week. I have to use this device on Friday for my CT scan and I think the nurses will really think I am extra annoying if I have a name for it and only refer to my port by that name. “Excuse me, sorry, you are hurting ________________.” I will cackle, cry, and choke on my tears as I am injected with glowing tracers.

Today’s song lyric of the day is brought to you by Cher. I had no idea that Sunday was daylight savings and now my whole week feels so off but I am loving the Cher themed memes. Here is a reminder to set your clocks back on Sunday, especially your annoying stove clock.

“If I could turn back time
If I could find a way
I’d take back those words that have hurt you
And you’d stay”

– If I Could Turn Back Time, Cher

Fast facts (if you don’t have time to read the full post): My port seems to be healing well with no signs of infection but I am in a ton of discomfort and weird pain. It hurts to breathe really BIG breaths. I refreshed my hair colors one final time on Friday and went to Spokane on Saturday with two of my close friends to try to enjoy a day out. I am just trying to fucking live but I feel so fucked.

TO THE LONG VERSION!

Anticipating cancer treatment feels like staring down the barrel of a gun. I know I am living in a moment in history where cancer treatments are “great” (aka they get the job done but it will cost you your soul lol) but there is no comfort in that thought. Survival rates are high for many forms of cancer and I am grateful that in a shitty situation you can have some hope. However, I cannot shake the feeling of the grim reaper following me around as I attempt to live these final full moments in my life before I take a swim in the underworld. I feel like I will be like Hercules when he jumps into the underworld to save Meg’s soul. I know this experience is temporary. I know it is a small blip in my timeline of what I hope is a long and fruitful life, but my life will never be the same again. Ever. What is happening now changes the course I was on and any other course I want to be on. My life feels like a fucking shit show right now and I am the lead fucking actress. I am going to do an Oscar-worthy performance of attempting to survive cells that are trying to kill me. I better fucking win.

I walk into spaces and feel different now. I am a stranger in my own body. When I go out, nobody can see the cancer, but I am acutely aware it is in me and that just makes me feel like I don’t belong. People think I am (physically) normal with my rainbow hair and mom jeans, or I guess as normal as one gets with rainbow hair in a sea of blondes and brunettes. I am not normal. Cancer at 29 is not normal. This is not the body I have been nurturing and setting up for success the last 29 years. I exercise six days a week. I limit my alcohol intake. I go to therapy. I try to eat well. I love on my friends and family. I try my best to be a decent fucking human being. It is hard not to feel like my body has betrayed me for all I have invested into it. I have cancer??? I have breast cancer??? What the actual fuck??????

I am dreadfully counting down the days until treatment starts and I keep looking for adventures and opportunities that fill my cup with joy right now because joy just doesn’t seem to be something I will really experience while poison is pumped into my body to save my life. I refreshed my hair color one last time. I went out for a cocktail with a friend. I went to Spokane with two of my best friends. I spent my whole morning talking to a new friend who went through breast cancer, wishing that this was not how I made new friends now. I keep searching for a sliver of normalcy in all of this chaos in hope that these moments and memories will be a life preserver for me in my darkest moments. I am holding on to these things for dear life and wonder how fast 20 weeks can really go while you feel like you are dying.

I cannot tell you how many times this weekend I got complimented on my hair. My hair is fucking amazing. I belong in a Skittles commercial. I am the rainbow! My hair dresser makes me feel like I am the coolest person on the planet. Walking out of that hair appointment for the last time on Friday crushed both of us. We parted in tears. It is another door closing in my life that I don’t know when will open again. Every compliment I got on my hair this weekend felt like a stab to the heart. I love being complimented on my hair. It makes me feel beautiful and seen for the most authentic version of myself that I am able to offer. I wanted to tell every stranger that I had cancer and my hair was my final act of defiance, but I can’t obviously tell every stranger that. That would be really weird, probably. I actually did tell one stranger at Lush while she helped me pick out a cleanser for my face. I told her I didn’t know what kind of skin I would have this spring and then I unloaded my heavy secret on her. “I am sorry to be emo right now…” is how I told her. My anxiety is still annoyed at me that I did that. Why was it not enough to take a hair compliment, joke about dry skin in the spring, and just leave with my fucking cleanser? I don’t want to traumatize people. I just really wanted to not ignore this new fact about me that makes decision making with already crippling anxiety a nightmare. She was gracious and gave me the best recommendation possible based on the information I provided and touched my arm in solidarity. But fuck. I hate that I told her. Who knew that cancer would give you word vomit?

So here I am on a Sunday evening. I am typing with a cat on my lap. My hair looks sensational and I am mourning my final moments looking like a rock star. Soon I will be a naked mole rat. A random stranger in Spokane knows I have the cancer. My port is uncomfortable as it settles into my left jugular. There is a massive knot in my back from sleeping upright on the couch the night before. My port is not infected, but my body is in pain. My neck hurts. I feel like I am falling apart today. I wish this was all over already. I am trying my hardest to count my blessings, to be thankful that this scenario should have an end but I can’t. Not today. I just want this to be over already. Can this be over already?

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

“I never thought I that would end up here
But don’t you tell me where did I go wrong
At this moment, I face my fears
I’ll be gone, I’ll be gone, gone gone”

– Gone, Donkong and Karol Tip

Fast facts (if you don’t have time to read the full post): Today at 6:26 am, I walked into the surgery center for my first “major” surgery as an adult and I am now the proud (temporary) owner of something called a PowerPort! Let’s call this a consensual lease agreement with an eviction notice at some point. I am resting at home for the day and my surgery was a success. If you stay here long enough, you can see some neat pics at the end. I promise they are not gory, but do want to give you a potential trigger warning if you are easily scared off by incisions. One is a general installation photograph and the other two are some artistic interpretations by two very talented good friends. I is art.

TO THE LONG VERSION!

“FUCK! This feels weird.”

Those were my last words as the anesthesia kicked in. I am glad none of the nurses or doctors I have encountered have been put off by my dirty sailor’s mouth. I hope they laughed at my final sentence as I drifted off to sleepy land. They warned me that they were giving me the meds and told me to look for signs of numbness and tingling. I have a vague memory of what that felt like. It was weirdly uncomfortable and my last internal thought was really focused on feeling that feeling. As the blackness grabbed hold of me, I imparted the world with my vulgar emotional feedback and I feel good knowing that if those happened to be my last words, they would make a decent gravestone or at least a memorable sticker.

“Fuck” is one of my favorite words, even when I am not sick. I love the versatility of the word. The versatility is almost at the level of potatoes. Fucking potatoes. I love potatoes. I enjoy that “fuck” can be a noun, a verb, a person, even an object! A word for any mood and any scenario. I don’t need to be angry to use it. I use it when I am happy. I also use it when I am confused and that seems to happen a lot. It’s a good word and I hope you can get comfy reading me use it because sorry folks it is my word of the year.

Let’s rewind to 5 am this morning when I woke up. I had dreams ALL night about my surgery. They were all the same. I would walk into surgery confident, I would black out in my dreams, and then “wake” up in my dream knowing it was over. I love that sometimes my brain does it’s job in protecting me as it battles my anxiety. I also know this mechanism is intentional because I chose not to research what this surgery would entail. For some folks, knowing what is about to happen to you eases the anxiety of what is to come. In my case, the less I know the better (as it relates to my medical care!) because I won’t obsess over something I literally have no information about.

I chose to wear my hot pink “Fuck Cancer” socks that feature a very cute cat graphic and rainbows, my Lady Gaga “Joanne” long sleeve t-shirt, and astrology themed joggers. For me, this outfit was intentional and a statement so that who I am and what I value are very clear and I felt confident. But literally I was only in this outfit for like 5 minutes before I had to swap it for some 80’s inspired hospital wear. Oh well. I made my nurses look at my socks before they put me under. They laughed.

Every nurse I encountered was AMAZING! I really have to give props to all of my many nurse friends serving in healthcare right now. I looked at my nurses and saw my friends in them and I know for a fact that my friends are giving excellent care to patients like me and I was so thankful. I was grateful for their patience and willingness to help me cope with my needle phobia and talk to me about my life. I felt like I was more than just a patient in their day. There is no better feeling than that right now for me to feel loved and valued by strangers who are caring for me.

Also, we are another needle down! I think my arm needle count might be standing at two needles. I do want to clarify that I will continue to encounter needles via my port site, so that doesn’t mean my needle days are over. I am just beginning my needle journey, but the insert location is less frightening and I will tell you why. But first, you need to know what the heck is in my body!

Today, I had a vascular access port implantation. This surgery was to install it under my skin. For vascular access, it is placed into a vein and the port allows medications or nutrition to be sent straight into my bloodstream. Blood can also be taken or given through this device. (Note: I am not linking to a YouTube video of this install because I prefer not to look, but at this time you could opt to Google this if you’re a visual learner/are not scared or keep reading for the written education component.)

During the procedure, a long, thin tube (a catheter) is threaded into one of my large veins. In my case, it was my left jugular. The tube is then attached to the port. Because it sits under my skin, there is a bump there now. To use the port, a special needle is passed through the skin and into the port. Fun fact: the needle can stay in the skin for up to 7 days, if needed. A port can stay in place for weeks or months or longer. This port is going to be used for my chemo treatment, making for less pokes in my arms. I have temporarily named my port “Porty Port the Port” but I think we could do a competition to name it something more clever. You can leave suggestions in the comments section if you’d like after you see what we are working with in the photographs.

Right now I am hyper aware of the port in my chest. My chest feels very tight and weird. Like if I slightly lean froward, I can feel it pressing against my skin. It is such a weird feeling! I am a mod now! This port I wear with honor as it is my armor. In ports we trust!!!

Although I am relieved I have crossed a big hurdle in my pre-treatment care, I recognize I am getting closer to my chemotherapy. This is starting to feel very real for me. I have a CT scan, bone scan, and an echo next Friday to make sure my cancer has not spread. Please send energy into the world that my cancer has not spread. That is my new biggest fear. I hope it has stuck to my breast and lymph nodes. We do know my left breast is cancer free based on my MRI results, so that is promising. Once those are done, I have an oncology appointment on March 17 and then off I go to kick some major cancer ass.

Today’s song lyric of the day is brought to you by Panic! At The Disco.

“Mama said
Fulfill the prophecy
Be something greater
Go make a legacy
Manifest destiny
Back in the days
We wanted everything, wanted everything”

– High Hopes, Panic! At The Disco

Here is your reward for making it this far! CHECK OUT MY SWEET MOD! And if you know where these captions are coming from, then this makes sense why we are friends.

Fast facts (if you don’t have time to read the full post): I will kick off day 10 of my journey tomorrow bright and early at 6:30 am for my port install! I am going to be a mod, minus the biker gang street cred obviously, but I definitely have some book cred. I am book smart, not street smart. *me cackling to myself at my own jokes*

TO THE LONG VERSION!

I am a chronic planner. If you’re remotely in my life, you know I value my Google calendar, lists, and detailed plans. You want to hang out Friday night and you’re asking me 10 am same day? Good lucky, buddy. You want to talk on the phone? We better schedule a time. “Spontaneous” is not a word I use in my world. I enjoy routine and structure. It keeps my anxiety under control and it gives me the illusion of being in control. I enjoy control. Not in a “I need to rule the world!” kind of way since I am definitely not Type A or have any interest in leading anything major, but I do love to know what is going on and have a say in what is happening.

Cancer has not surprisingly thrown that all out of the window. My only structure left is my treatment plan. My world is free falling at several WHAT THE FUCKS person second. My anxiety is off the charts. I am really struggling to grab hold of the reins of my new life. I don’t even know if there are reins to grab, but my arms are out stretched looking for something that will make me feel stable again.

I crave who I was a month ago. I was making eggs benedict for breakfast. I was making plans to visit my friends in Idaho, in Chicago, in Florida. I was finally looking forward to life again because the last two years for so many of us has been spent in survival mode. I didn’t know there was a lump in my boob. I didn’t know I have cancer. I am so pissed I still need to operate in survival mode. So so pissed. It is so draining.

Despite this shit show, I am giving off the appearance that I am taking this well. I want to clear the air and say that I am not and that is okay. Both parts of me are welcome here: the part of feeling shitty and the part of projecting something more positive, less doom cloud. My emotions are on a roller coaster. I have moments during the day where I am distracted and I am just plugging away at work and then I go feed the squirrels outside and I see Squirrely Dan and I cry because I don’t get to be present in her life as much this summer because I have cancer.

So far, cancer has just felt like an idea. I haven’t had to do anything really hard yet, so it has been super easy for me to project that I am okay because I somewhat am. I feel the lump in my breast, so I am not in denial but something about this whole thing just feels unreal. I have done some uncomfortable things so far like confronting needles in my boobs and my arm and making challenging decisions about my healthcare, but I haven’t made it to the part where I get injected with poisons to cure me. I still have my hair and my breasts and a sense of femininity as a cis woman. But I would be lying if I didn’t admit to you all that I am still wrapping my brain around the immense loss I am about to face. I still think I am in a nightmare and I will wake up not as a lumpy potato, but a happy little potato.

Tomorrow I have a feeling the nightmare will become my reality after my port is installed. I am pretty grateful that it is so early in the morning though. I get the whole day to rest! And I don’t have to fast or not drink water all day. I was super stressed that my surgery would be at 3 pm and I would be curled up on the floor at work wishing for water. I will leave surgery, loopy and weird and there will be a device above my heart that will make receiving my chemo and other drugs or drawing blood a lot easier, but that also means this is very real. The idea is now a concept turning into a long term project. I am just glad it is not a group project because those can get pretty iffy, amirite??? Hahaha. College jokes. I guess this is technically a group project because I have doctors treating me, but they seem less sketchy than some of my past group project participants. I think I can count on them to pull their weight.

My port is going to be a weird addition on my body. Tonight is my last night that I will see my chest like this. Everything from here on out will be a modification: my port, the removal of my breasts, and the reconstruction of my new breasts. It is hard not to be a little sad because I don’t think I understand fully yet what is to come. However, I think I might look badass with my port. You don’t want to fuck with someone with a mod, you know? You don’t want to underestimate how strong they are because honestly I am stronger than you think. I am stronger than I think.

Today’s song lyric of the day is brought to you by Simple Plan. You knew this song would come up at some point, right?

“I’m just a kid
And life is a nightmare
I’m just a kid
I know that it’s not fair
Nobody cares
‘Cause I’m alone and the world is having more fun than me tonight”

– I’m Just A Kid, Simple Plan

Fast facts (if you don’t have time to read the full post): Lol. This is turning out to NOT be a light week at all. I now have surgery to install my chemo port on Thursday (time unknown) and my referral was processed with the folks who will be handling my reconstruction surgery today. I lightly reviewed the clinical trial information and still am on the fence.

TO THE LONG VERSION!

When I was younger, I wanted to be an astronomer. Yup. I think I got that confused with an astrologer to be honest. We grew up behind the library on Union and I checked out countless amounts of books about the universe and natural disasters. I also read a lot of Lois Duncan books and was low key interested in astral projection for a hot minute. Okay, I still am. I really cannot say what drew me to those topics. I just was really weird and introverted and liked all sorts of things. I still do. And I am still weird.

When I started college, I realized astronomy was not in my stars. *ba dun tss* I am just really bad at math and that involved A LOT of math. So I studied what I was good at: people. I know a lot of folks know me as a creative and my day job as a designer, but one of my two majors is in psychology (the other digital technology and culture.) Like many cliche psych majors, I love the way people think, but where my psych major led me was unexpected. I did bridge a lot of my two majors together through various art projects and my internship in the communications department on campus, but some of the work I did related to data collection and my undergrad project was fascinating.

One of the professors on campus was running a study looking at patients with BPD (borderline personality disorder) and mediating factors that increase or decrease risk for opioid misuse. My psych undergrad capstone project focused on the effects of violent and sexual advertisements on product recall. Although I realize math is not my strong suit, the research I was analyzing and collecting took my education to a whole new level! I learned and valued the power of what studies can do for advancements in education.

When my oncologist mentioned the opportunity to participate in research, my little heart jumped with excitement with the opportunity to contribute. So much of what we know in medicine has come out of studies and I see so much value in that work. However, reading over the research study information has me all sorts of unsure because it actually involves my health.

This particular research study would be a randomized, double blind study that is currently in its third stage. It would be examining the safety of the study drug pembrolizumab (MK-3475) with certain types of chemotherapy and endocrine therapy and see how well that drug works when combined with chemo and endocrine therapy compared to treatment alone. This drug has been FDA approved with other types of cancer, but not breast cancer specifically. This study would last approximately 12 years.

There is a one in two chance of me receiving this drug or the placebo. It would be administered every three weeks during my chemo treatments. My oncologist and I would both not know if I am receiving the drug or the placebo unless I have a medical emergency. Like many things, there are side effects. I don’t want to get too deep in the weeds right now, but the main side effect I am most concerned about is that there is a 10% chance that I could develop an autoimmune disorder if I receive the treatment. I have no idea if that means ANY disorder or if it is limited to just some disorders. Questions I need to ask, I guess. I honestly wish I could just share the study with so many of you because it is really fascinating and there is a lot of information included in my packet that I have not included in this post for brevity. The opportunity to give back in such a meaningful way intrigues me, the same way I loved conducting and analyzing the data in college. I just wonder if my life is worth the risk for science right now. Deep thoughts.

Meanwhile, my week has gone from being chill AF to lit AF, and not in a fun way. I got a call today about the installation of my port! This port would allow me to receive chemo treatments and endure other needle events through a singular location on the left side of my chest. This is great because that means no more poking my arms and major anxiety attacks induced by needles! The sad news is I have to endure one final big boss needle and go night night for surgery to get it installed. I mean, no biggie in the grand scheme of things but it is just another hurdle I need to cross to even get to the beginning of the race. And it means this is really happening. I am going to be starting chemo soon. I have cancer.

Fuck.

On top of the medical tornado I am still in, I got a call from the folks who will be in charge of my reconstruction surgery. They are based in Spokane, so I see a couple Trader Joe’s trips in my future! Yay more plants! Just kidding. This is great, but honestly I felt myself overwhelmed with three new appointments scheduled out in May and June. The lady on the phone was BY FAR the sweetest human I have encountered on this breast cancer journey to date. She told me to call her if I ever wanted to cry or talk because she is a breast cancer survivor. The empathy and love I felt over the phone from a woman who only knows my date of birth and my cancer diagnosis was like eating warm bread pudding for breakfast. It was so sweet, so comforting, and yet made you sad because you wish you could feel that way all the time.

So, to recap what is left on my to-do list before chemo: get my port installed Thursday; submit my FMLA paperwork to the state; final CT and bone scans along with an echo of my heart; finish reviewing the research study; cry; sleep.

Are we there yet?

Today’s song lyric of the day is brought to you by Kaskade. One of my lovely friends texted me this morning and said this song made her think of me.

“Floating on the water
Staring in tonight
Soaking up the magic
Specks of tiny light”

– Floating,Kaskade

Fast facts (if you don’t have time to read the full post): I had my first blood draw as an adult! One needle down and three to go. This week is a light week in terms of appointments related to preparing myself for treatment. I worked today. I ate cheese.

TO THE LONG VERSION!

One week ago today, it rained. Well, it also snowed. And sleeted. The weather was really awkward. One week ago I also got the cancer diagnosis and today it also rained. The coincidence is important to me because when it rains, you should look for rainbows. I met my mom at 12:30 pm today at the cancer center to get my blood drawn for the first time as an adult. It rained on the way in and the sun was beaming bright on our way out. I have decided that this is my omen for what’s to come.

Whenever I bring my mom with me somewhere, someone is bound to know her. If you know my mom, she is probably the rainbow in your life. Shit, she might even be the sun and you revolve around her that is how gravitatingly wonderful my mom is. It is an honor to be a moon in her orbit. Asking her to go with me to the cancer center to get my blood drawn so she can hold my hand and show me where to go could easily be the most important part of my journey to date because my mom was only here herself a year ago. In true fashion, one of the staff members in the patient center remembered her while we waited to submit some paperwork. I held back tears as she introduced me as her daughter who was now here on her own journey. The pain I felt in that moment was almost unbearable.

My mom was diagnosed with stage three HPV throat cancer three days before Thanksgiving in 2020. Her cancer journey was swift and fucking hard. Hard is not even the best word to use. Whatever word that is harder than hard is the word I need to express what happened. And I know it is still hard for her. She has been been cancer free since March 2021. Her journey has been remarkable and I count every day as a blessing to still have my mom and even have her for my own cancer journey. I know she will read this and probably cry. Mom, just know I am crying as I write this and you are my hero and I cannot wait to be cancer free with you. Like mother, like daughter.

So, my mom held my hand. I told her she was my best friend. The needle slipped into my squirmy little vein and seconds later I walked away with my rainbow and saw the sunshine.

One needle down and three to go (I think.) I am still 110% impressed with the magic of accessing your medical records through KChart. I literally got my blood results back when I got back to work! My results so far look great. I have nice healthy blood. A vampire would approve, probably. Drink me up, you late night creep. I am healthy and delicious! I only had two reports in my account, so I am curious if more will appear soon and I can learn more about my inner health. Honestly, I have been concerned about my body because of my parosmia, but I am impressed so far that I am an okay potato. Clearly I was not that concerned because I haven’t had blood work done until now, but the needle phobia is very real despite the tattoos and piercings on my body that may try to convince you otherwise.

The sad part is none of my tests I had done today can tell me my blood type! LIKE EFF. Now that I am on this very science based journey, inquiring minds want to know. I am doing some major soul searching tonight. Am I desperate enough to ask for more blood work right now? The mystery is haunting me. I am tempted. I feel brave.

Speaking of mysteries, the mystery gift giver has stepped forward. Of course it is none other than one of my amazing friends from Chicago! Cheeky little gift giver. One less thing for me to be anxious about.

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

“I would be nothing
Without you holding me up
Now I’m strong enough for both of us
Both of us, both of us, both of us”

– Giant (with Rag’n’Bone Man), Calvin Harris

Fast facts (if you don’t have time to read the full post): Here is a glimpse into my mental health at this time. Also, if you send me something in the mail, can you let me know it is from you so I can properly thank you because I really love you for caring about me.

My doorbell rang and I wasn’t expecting a package from you. Who are you?

Dear mystery gift giver:

The mailman came and rang my doorbell. I had not ordered anything from Amazon. I should stop ordering from Amazon. The package was addressed to me. You knew where I lived. How did you know? I opened the box and saw a small blue box. “Waysoft Socks” it read. Animal themed socks. The pink pig socks are the funniest because they are pigs with leopard print. Who designed these??? They are ~way soft.~ There was also a pair of spring green breast therapy packs and Biotene dry mouth oral rinse. How did you know? You know me so well. Why do you know me so well?

There was no gift receipt to thank you, so I hope I can find you here. Alright, so now it’s your turn: maybe this comment section I have active is real… and maybe it isn’t. I dare you to find out. Please reply.

Looking for you,

The girl with the cancer at the home that receives packages.

________________________________________________________________________

For a few hours last night, I felt normal. I didn’t have cancer. I was at my friend’s 30th birthday party with my hands in the air as the DJ played my song. My friends were laughing and dancing. There was cheese. For a brief moment I didn’t think about going to war on my body. I was Madison at an intimate gathering dancing with my friends. I felt free.

But the quiet moment in the corner of the kitchen while nursing my blue gin drink brought me down to reality. I had moments of heaviness in a room that made me want to feel forever happy and carefree. My world has felt like it has stopped. I feel like these final days leading up to my long road of treatment are so precious to me. I know my treatment won’t last forever. I will destroy the cancer in me. But I have major FOMO during the time I will be very sick. My life will revolve around making sure I live. I just hope I can find time to actually live in the moments where I feel like it is hard to keep going. I want to dance with my friends. I want new friends I meet at parties to tell me how amazing my hair looks. I want to sip little drinks that my friends craft for me with my parosmia in mind. I love how those things feel. They feel like my favorite sweater. They feel like home.

So many friends and family have made me feel loved and supported and nothing has even happened yet, well aside from the earth shattering news but you know what I mean. I have seen every single person in my life grab a pitchfork, ready to fuck shit up with me. What did I do to deserve this love in my lifetime?

Today’s song lyric of the day is brought to you by Macklemore. This song slaps. You should listen to it and dance in your home with me.

“And we danced and we cried
And we laughed and had a really, really, really good time
Take my hand, let’s have a blast
And remember this moment for the rest of our lives”

– And We Danced (feat. Ziggy Stardust), Macklemore

Fast facts (if you don’t have time to read the full post): Yesterday, I met with my oncologist at the Tri-Cities Cancer Center and I have a general treatment plan to share. I will start with chemotherapy once every two weeks for the first four treatments, followed by twelve weeks of weekly chemotherapy. After this, I will have a double mastectomy and then complete six weeks of radiation. Finally, I will end with reconstruction surgery. My MRI results came back showing no additional masses they want to examine or biopsy in my breasts, which was great news. Upcoming appointments include a CT scan, bone scan, echo on my heart, and finally the installation of my port. The CT and bone scan are to make sure that my cancer has not spread anywhere else. I am anticipating starting chemo mid to end of March, as long as things go to plan.

TO THE LONG VERSION! It be extra long today. I hope you like reading.

My grandmother once told me that I looked best in olive and jewel tones. Whatever she told me was fact, so that piece of advice has guided my whole fashion experience. She was one tough and brilliant woman. Her eyes were these crystal blue intense balls that pierced your soul. If you looked away, they still chased you so there was no point in avoiding eye contact. She also was a pioneer with computers. Her room was FULL of floppy disks. She was always doing “research.” She had these really pointy nails, like claws but scarier. Horror story scary. She definitely sharpened them with the fears of small children. There was this children’s book I loved as a kid that involved Miss Piggy going to the doctor. She would pretend to “give me a shot” by pinching me super hard when Miss Piggy had to be brave during her checkup. I endured it because Miss Piggy got to pick out a reward at the end, so I thought I would get one, too. I never got a toy from the pinches, just some weird indents on my skin. We read that book a shit ton.

I think I just had a breakthrough in this post. This is why I have phobia of needles. This is hilarious. Damn it, grandma!!

She didn’t purposely traumatize me. She was preparing me for something she probably already knew about me, that I was scared of needles and being sick. Look at me now, grandma! This is not the fate she would want for me, but she definitely has prepared me for this moment.

I’ve been to the Tri-Cities Cancer Center several times. The library and the TCCC have partnered together several times on projects, but yesterday I had to go for a different reason and that weighed heavy on me. I was the youngest person in the hematology waiting room rocking my olive button up and rainbow hair and it was hard not to start crying. I am here because I have cancer. I am not here for work anymore. I am here to save my life.

Everything in life is transactional. There are prices to pay for the things we want. In order to save my life, I have to sacrifice other things about myself to do so. I will lose my hair. I will lose my breasts. I will compromise my ability to have children if I ever want that. I will be in pain. But I will do this all because I want to live. Choosing yourself would seem like an obvious thing to do, but it is still hard. This feels selfish given what is happening in the world. I feel guilty complaining about this. I feel small. I feel privileged to have access to healthcare that can save my life. These ideas compete against one another and I know my therapist would say to make space for all my parts right now. I am trying.

I realize some of these losses are temporary. I will eventually get my hair back. I will receive a new set of breasts. The pain will lessen. But I am not there yet. For now, I mourn the things I cannot control about myself and about the world.

I have an excellent care team. I met with my oncologist and learned more about my treatment plan. I will start with chemotherapy once every two weeks for the first four treatments, followed by twelve weeks of weekly chemotherapy. After this, I will have a double mastectomy and then complete six weeks of radiation. Finally, I will end with reconstruction surgery and will need to be on estrogen hormone blockers for at least five years. This process will take me through late summer, assuming all goes to plan. My chemo will be a cocktail of three drugs, but I forgot to ask what the special mixture is. (I don’t think rum is involved though and that is my kind of cocktail, amirite?!) I will get more info about that soon. My doctor believes I should react well and be a functional human being. I hope to work as much as I can and retain a lot of my normal life without pushing myself too much. I want this for myself, to remain invigorated by my work, my art, the life I have been designing for myself. I think it will be good for my mental health if my body reacts well to chemo.

I also have been presented with an opportunity to participate in a clinical study! I am intrigued by this and will need to take the time to review the study and can share more information on that in another post. This study is focused on immunotherapy. There are some risks I need to weigh if I choose to participate. If I chose to participate, I would be randomly selected to receive a placebo or the immunotherapy and would receive treatment every three weeks throughout my chemo. That I will noodle on for a bit.

Meanwhile, I have approximately three more needle encounters before I receive my port! *shivers* Needle one is a blood draw on Monday. On March 11, I will have a CT scan, a bone scan, and an echo for my heart and will need to be injected with some sort of contrast, so that is needle two. The chemotherapy unfortunately can damage my heart so my doctors want to get a good baseline of what is happening and see how healthy I am. My MRI from this week came up with no other concerning issues in my breasts other than what we already know, so no more biopsy needles for now! Needle three is to put me to sleep for my chemo port. I am assuming these are the only needles left to go. I could be wrong. Needles be like, “I will look for you, I will find you, and I will kill you.” They won’t kill me, but I hope you get the reference.

There is also an injection I will receive to attempt to protect my ovaries. Oh fuck, that might be a fourth needle??! Lol fuck. Earlier this week I hinted at some fertility preservation issues I was having a hard time with. I am still working through those feelings so that can be for another post. For now, it sounds like chemo will not completely destroy my ovaries and fertility preservation is not something my doctor wants me to do because the hormones required to make my eggs retrievable could make my cancer worse. Things are already bad, so time to get to work to get rid of this monstrosity.

Today’s song lyric of the day is brought to you by Green Day because I am an ~emo~ girl in an emo world.

“Summer has come and passed
The innocent can never last
Wake me up when September ends”

– Wake Me Up When September Ends, Green Day

Fast facts (if you don’t have time to read the full post): Today I had a meeting with a genetic counselor. I will be tested for 47 different cancer causing genes including BCRA1 and 2, which so happen to run in my family. I also had an impromptu meeting with a fertility preservation clinic in Seattle over the phone and scheduled my first appointment with my oncology team for tomorrow at 4 pm. MRI results have come back, but I could not get into my account to see the results, so I am guessing I will learn more tomorrow. 40-50% of MRI results come back with results that will end with more ultrasounds and biopsies to make sure the doctors are not overlooking any spots of concern that could be treated.

TO THE LONG VERSION!

This post might have 56% less sarcasm today than previous posts. I had a really really hard day. So fucking hard. On top of what is happening in world in Ukraine and the fucking transphobic shit in Texas, this day felt like an emotional hell. I am not ready to write about the hard parts of my day in this post since I am still processing them and it has to do with my fertility preservation meeting, so hopefully in another post I might be able to talk about it. For now, let’s talk GENES! Time to recall your short time in biology 101. Woo!

I cannot stress the value of asking your family about their medical histories. If you need to stop now so you can go have this important conversation with your loved ones, I can wait. Ask about history of cancers and other diseases. When was someone diagnosed? Has anyone had any genetic testing done? I will be right here until you get back. 🙂

Today I want to specifically discuss BRCA genes because that is what is impacting my journey with cancer the most. I am on a HUGE learning curve with this, so I am heavily relying on this awesome site that I am going to redirect you to learn really fast what BRCA genes are and what it means to have a mutation and then I can tell you how this is playing into all of this. You can click on this informational bit here. Don’t worry, I will still wait for your return once more. This link is a must read, otherwise what I might say next may not make sense.

Several family members on my father’s side have tested positive for either BRCA1 or BRCA2 genes. Many have been diagnosed with cancer. Because I want to be sensitive to my family members, I am not going to say who but just the type of cancers these family members have had or are currently battling: prostate, breast, and ovarian. And here is me, diagnosed at 29 with breast cancer. I am the youngest in my family with a cancer diagnosis. My counselor said she is not a betting woman, but she is willing to bet that I will test positive for carrying the BRCA1 mutation. She would be VERY surprised for my results to come back otherwise given my current diagnosis.

In total, I will be tested for 47 different cancer-causing genes! Although we are particularly focused on the BRCA outcomes, the others can be helpful down the road. A positive diagnosis for me can help inform my treatment on a deeper level. If you made it to the part about PARP inhibitors, congratulations because that is the most interesting part, or at least to me. (And you probably saw the second paragraph about triple negative cancers, and I told you not to click on it so I hope you didn’t because that isn’t my problem anymore! Don’t torture yourself unless you’re feeling okay mentally haha.) The PARP inhibitors could be another tool in my treatment if I am BRCA positive. PARP helps repair DNA when it becomes damaged, but when it comes to these mutated genes and cancer, PARP inhibitors can prevent these cancer genes from repairing their damaged DNA, ultimately making them die.

Like I mentioned, some of my family members have completed their genetic testing and one reached out to me and faxed their information to my counselor for today’s meeting. We were able to discuss it and I learned that the particular BRCA1 gene mutation that is appearing in my family has something called a deletion and is missing three letters in the gene. It is important to note that not all mutations are high risk; some appear to be harmless variations. “The cancer risk associated with any given mutation varies significantly and depends on the exact type and location of the mutation and possibly other individual factors,” according to this Wikipedia article. Unfortunately in case of our family, ours is a high risk mutation.

So this brings me back to my first request. Do you know your family’s medical history? Can you be that catalyst to start the conversation and be a pioneer in getting tested? I know that is scary and sometimes not fun to think about, especially when you’re young. I wish I had thought of it sooner. It might have steered me away from this journey with cancer. But what I know now is what I want to use to help YOU. Ask your primary doctor what steps need to be taken to get a referral for genetic testing. Because I got to genetic counseling through this experience with cancer, you getting there might be different than how I got here so consult with your doctor. If you have someone in your family who has tested positive for BRCA1 or 2, this makes the process a lot easier. I learned that with my test, my sister can get tested for free up to five months after I get my results. That test result could give her critical information to be proactive about her health. Technology is amazing.

Oh and you may be wondering about the test itself! Super easy. Just massive swab you rub in your cheeks ten times on each side. Easiest test I have had so far. I should get my results in about 3 to 4 weeks.

If you have done 23&Me, that is a great resource to learn about your ancestry and some other interesting and informative facts. However, please read the full explanation of carrier and variant reports. I misread the report about the BRCA genes and currently the “test includes three genetic variants in the BRCA1 and BRCA2 genes that are most common in people of Ashkenazi Jewish decent.” If you are not of Ashkenazi Jewish decent, this test is pretty useless to you. I work at a library and you’d think I would be a good reader, but I missed that very important detail and this whole time thought I did NOT have the BRCA genes. Reality is about to check me the fuck up. Don’t be like me and read. Lol.

Today was a long day and my emotions hurt. My heart aches. But I did learn a lot. I hope you did, too!

Today’s song lyric of the day is brought to you by Daft Punk!

“I’ll just keep playing back
These fragments of time
Everywhere I go, this moment’ll shine”

– Fragments of Time, Daft Punk