Listen to the audio experience as you view my pieces and read my story below.

Then: I’m not a monster, but my body scares me. I’m not dead, but sometimes I feel like I’m dying.

Now: I know I am worth more than a metaphor for trauma. I am currently the product of science working at its best and the timing of the universe. I’ve mastered survival mode. Now it’s time to stop and smell the roses.

The in-between: Late at night, when darkness envelopes me and shapes turn into shadows, I wrap my arms tightly around my torso and feel the gap between my arms and my chest. I run my fingers gingerly over the raised map of scars that decorate my body. Tears stain my pillow, a welcomed coolness as my body radiates warmth from the rolling hot flashes.

Inhale. One. Two. Three.

Exhale. Three. Two. One.

I gave so much away to be alive: I sacrificed my body, I lost months of my life. Cancer took and took and took until I had nothing left. I had to make a choice to surrender to my situation in hopes that surrendering didn’t mean that I was giving up, but to make way for what was next.

In the cancer world people often talk about finding a new normal after cancer, but nobody tells you how to find it. The dust has settled, but I am finding that I am too scared to step fully into the “now.” When your survival rate is 30% at the five year mark, when a new normal feels like a constantly moving target you cannot seem to grasp, planning for the future feels like I might be getting ahead of myself.

Will I ever feel safe to dream again?

So for now I sit in the in-between, with hope a prerequisite for my survival like it never was before cancer. I can’t go back, but I can always move forward.

Fast facts (if you don’t have time to read the full post): 29 DAYS UNTIL (APPROXIMATELY?) UNTIL I STOP ORAL CHEMO! Labs are still coming back stable. I am looking forward to February with awe, excitement, and major anxiety.

Countdown to last day of oral chemo: 29 days

TO THE SHORT VERSION!

“Not trying to be creepy but are you at the cancer center right now? I think I’m sitting right across from you lmao.”

Before clicking send, I did one more once over of the girl across from me, assessing that accuracy was at 95% and above and that this indeed was my friend I haven’t seen in over a year. She was already on her phone so I figured if I was right, she would see my message instantly. If I was wrong, well, my friend would read it sometime later in the day.

Her thumb slid down the screen and her eyes met mine. She beckoned me over and so began the 20 minute catch up between two stage IV AYAs in the waiting room at the cancer center too early in the morning.

The room was quite full considering it was a Monday at 8 am. We were the only under 40 years old patients (from what I could tell) in the room. Almost two years in and I don’t think I get less stares of pity/curiosity/wonder between appointments. I think it is a mix of my age and my bright hair. Something about me just screams, “LOOK AT ME! I HAVE CANCER AND I AM REALLY COOL. LET’S BE FRIENDS???” Or that is the energy I am trying to give.

I don’t think we were being super loud during our 20 minute catch up session before our appointments, but I am willing to bet it is rare to see two young people at the cancer center so engrossed in conversation that I was mindful there were ears listening in. We chatted about where we were on our treatment plans, upcoming surgeries, and the fact that not a lot of people can relate to our life experiences and staging. Although my friend’s cancer is more advanced and different than mine, she’s the only person I know personally (and can meet up with in real life, not on a chat forum or Facebook group) that is young and stage IV. Cancer: the glue that bonds you for life!

I found myself getting emotional mid conversation at the rarity to be seen and not have to preface conversation with additional information or emotions so that someone without a diagnosis or someone with not as advanced of a diagnosis can have a clearer picture. Don’t get me wrong…. I am super grateful for those who show up for me despite not fulling understanding me. However, she just *gets it* and I just felt really grateful to be understood so perfectly in that moment.

Our conversation ended in a hug as I got called back for my monthly hormone blocker stabbing with promises to connect. My nurse said I could stay in the waiting room longer if I wanted to keep chatting, but delaying the inevitable that I hate so much would have just been worse, so off I went to my lil pod.

Another month of decent labs and nothing new to report. February is when things will get funky. The excitement of oral chemo ending is intertwined with fear and anxiety. What if recurrence happens in the next six months? What if oral chemo has been the only thing holding me back? What if the hormone blockers are not enough?

What if? What if? What if?

I am at the mercy of my destiny. Come what may.

Today’s song lyrics of the day are brought to you by Matroda.

“I can’t fight the feeling
That I’m feeling
You can’t fight the feeling
Can’t fight the feeling”

– Can’t Fight The Feeling, Matroda

Fast facts (if you don’t have time to read the full post): I guess August flew by? I celebrated one year of being infusion chemo free on August 4 and I am fast approaching my chop chop anniversary. Things have been hard lately, not going to lie. Emotionally and physically things are changing again and I feel like I am getting closer to understanding more about the new version of me.

Countdown to last day of oral chemo: 160 days

TO THE LONG VERSION!

People talk about survivorship as this magical land full of promise and healing and good vibes and I am just here to tell you that it is anything but fucking that. Survivorship is like traveling without a compass or Google Maps. You’re missing half of the exits to get off the highway, there’s a baby screaming in the back of the car, and you forgot to pack underwear. You’re excited for the destination but you’re also as impatient as a six year old complaining, “Are we there yet?”

Turns out that survivorship is not a tropical vacation destination like they make it out to be during active treatment. (I use “they” loosely because it refers to providers, people rooting you on, and those on the other side.) Okay, that might be an exaggeration, but everyone wants you to get through treatment to get to the other side because it is better. The cancer should be “gone”and you should be happy again! But now that I think of it, survivorship is laced with toxic positivity and really shitty tequila. Just when you think you’ve reached the promise land, you get out of the car and you’re still in the middle of the fucking desert.

Granted, these feelings ebb and flow but I am shocked that I was led to believe that getting through active treatment was the hard part. Don’t get me wrong, getting massive doses of poison pumped into you is not a great time either. The side effects are awful. I don’t have any rose glasses on about that. But treatment is out of your control! You are doing what you are told and going through the motions. Survivorship is a completely different beast that is constantly evolving. The training wheels are off. Nobody is telling you how to do things or what to do next. One minute you’re staring at a friendly cemetery ghost and the next you’re battling it out with demons straight from hell. Just when you knock one out, another comes out of the shadows.

In short, the last month-ish has been hard emotionally (and a little bit physically, too.) I truly believe that our bodies remember anniversaries and significant moments in time that go beyond our consciousness and unconsciousness. Things were going okay around my chemoversary (August 4), but as I approach my mastectomy anniversary (September 15), my body feels angsty and upset.

To be fair, my oncologist switched my hormone blocker at the beginning of August from anastrozole to tamoxifen. She sold the switch under the guise of less joint pain (which I was not really reporting any but ok….) and better for my type of cancer long-term, but with more ~mood swings.~ When she said this, I recalled my initial mood swings when I started zoladex injections and laughed fondly over the memory of crying over pancakes. Instead, I am crying before exercising every morning and having fits of rage. Life just makes me feel a bit uneasy overall. I feel a bit on edge.

I saw my oncologist last Thursday and reported the mood swings and additional joint pain in my knees and weight gain when she asked how I was feeling on tamoxifen. She offered to up my antidepressants (which I declined) and told me to just keep exercising because the weight gain was because of menopause. That perplexed me because I was doing JUST FINE on anastrozole in terms of mood, body confidence, and joint pain until I switched. My routine hasn’t shifted all that much since starting the new medication. I am exercising almost every day and I am still in therapy. What gives??!

I also started experiencing some intense pain in my right forearm and hand last week, beyond the occasional soreness I get from not stretching my arm or chest enough. I was pretty swollen when I saw my oncologist and expressed concerns about lymphedema. Lymphedema is swelling due to build-up of lymph fluid in the body. Lymph nodes act like a drain in your sink. If the drain is clogged, the fluid cannot drain. It is very common for folks who have had radiation and for breast cancer patients. I thought I was keeping it at bay given how active I am, but surprise! This is not an area of expertise that I know much about nor was I educated on. And my oncologist just kind of brushed me off! It was kind of shocking.

I had concerns mostly because it is super uncomfortable and I have this insanely fear that it will increase out of of my control and I will have a permanent balloon of an arm. Lymphedema also increases your risk of infection in the swollen area and it makes me really insecure and self conscious. She sent a referral out to get help in managing it after I practically begged her, but she seemed unbothered and unconcerned which annoyed the hell out of me. I left my appointment feeling deflated.

Luckily ranting on the internet does have its perks. I posted a bit about my arm and several people reached out with tips and tricks to help with managing the swelling and pain. Honestly, what did patients do before social media to get additional information on how to survive? But on the flip side, I feel like an annoying bitch on the internet randomly appearing to complain about the never ending problems I have and then disappearing after that. I just simply don’t have capacity for much anymore.

I’ve been trying to get the root to that feeling… that feeling of not being able to show up for others the same way I did before my diagnosis. I was a “yes” person. I was willing to help with anything and everyone and often times my social calendar was packed to the brim. When I first started experiencing this distancing (for a lack of a better word right now) after finishing active treatment, I thought it was just residual effects from enduring a year of complete shit and it was a feeling that would fade away. But it is still here.

Group conversations on Facebook messenger have gone unopened for months. Part of me wants to hop in, but I have been gone for so long I question if I even deserve to be in those spaces anymore with people who have chosen to keep in touch while I have withered away in the corner. My phone is clogged with unanswered texts. The colorful chat bubbles taunt me. I have notification after notification that sit unaddressed in other social media apps.

Why is it so hard for me to participate in connection?

I’ve been trying to pinpoint it in therapy and I’ve talked with other patients and it just seems to be a common thread. Our priorities have shifted to us. We no longer are in positions of giving everyone complete access to ourselves. Our functional time is limited and finite. And we are figuring life out of again. It has left me guilt ridden lately. I don’t know how to explain this experience to cancer muggles. Things just kinda suck right now and I thought it would suck less, but it still sucks. And I am sorry. I wish I could show up the ways that I used to, but I am genuinely struggling.

And then there is also the feeling that I feel like I talk about my caner too much. I’ve joked about it feeling like a personality trait (which I genuinely hope people don’t think that) but it is a massive part of my life now and impacts literally every facet of who I am. From my emotional and physical state to the never ending appointments and advocacy work I feel drawn to, it is just sorta…. there. Mix that with feelings of feeling like I am too much for others and feeling alone, it has become the perfect storm of ceasing communication across the board.

I came across this quote on one of my cancer social pages and thought it summarized my feelings perfectly:

I think the hardest part of cancer treatment is at the end, when everyone assumes you’re “cured” and you no longer need their help. You’re in your weakest, most devasted state, plus you no longer have the mission you had when you began this journey: to kill the cancer. The cancer is toast, but so are you, and now, like a soldier at the end of war, you need help putting yourself back together, only everyone has gone home since they assume the war has been won.

Anonymous

As much as I try to force myself back into a semblance of routine, it is still painfully hard to navigate and I am struggling and for those who have been harmed by my inability to show up in the ways I used to, I am so sorry.

Really. I am so sorry.

I am trying to find solutions to return and I want to believe they exist and are in my future. I don’t have a timeline. So, all I ask is be patient with me. Don’t forget about me. Keep trying to throw the buoy out to sea. I am drowning and soon enough I will gasp for air and grab on for dear life.

*******************************************

Because I was not sure how to transition back to some interesting cancer factz, I put those asterisks so we could all compose ourselves! How kind. And I wanted to end on a cool note. Last month, I donated some of my blood samples to a new blood test that was recently approved by the FDA called Signatera. This test is a highly sensitive and personalized molecular residual disease assay (MRD) using circulating tumor DNA (ctDNA), custom designed for each patient to help identify relapse earlier than standard of care tools.

The Signatera Residual Disease Test is a custom-built blood test for people who have been diagnosed with breast cancer or other solid tumors. It can detect molecular residual disease (MRD) in the form of circulating tumor DNA—small fragments of DNA released by cancer cells. So basically, we submitted a tissue sample from my tumors from my surgery last year and current blood sample to build my unique test. Every three months I will have additional blood samples submitted to monitor any changes in ctDNA levels, which can help inform us if my cancer is shrinking, growing, or coming back.

This is a helpful tool for us to use in addition to scans which over time I will receive farther and farther apart as long as I remain NEAD. Of course we are not using this as our only tool for monitoring, but it is a fucking cool tool that makes me feel like I am living in the future. And because of this test, I am extra grateful I kept my port because ya girl still hates needles!

I was supposed to have baseline information at my last appointment, but I guess we accidentally sent the biopsy sample from February 2022 instead of my larger surgery sample from September 2022. Now we have to wait longer for results, but I guess no biggie since we know based on my recent July scans that I am currently NEAD.

Science is cool.

Today’s song lyrics of the day are brought to you by Justin Dust.

“I was left to my own devices
And now I am in deep
I’m dreaming of paradises
But I’m not asleep

Bring me alive
I need you to bring me alive
I need you oh oh oh oh”

– Bring Me Alive, Justin Dust

Fast facts (if you don’t have time to read the full post): Last week I had a CT scan on Tuesday, July 18 and got my results at 7:34 am via MyChart. Per usual, I am always by myself when dramatic things seem to happen. Luckily, the news was not horrific and I am NEAD! I see my oncologist on August 3, a day before my one year anniversary of finishing chemo. We will see what she has to say about my results. Eeeek.

Countdown to last day of oral chemo: 202 days

TO THE LONG VERSION!

“Did she tell you I had cancer,” I asked my new co-worker. It was a question that followed two instances in the previous minute that I struggled with word recall. I hate that words escape me. It embarrasses me and I hate saying that chemo has made me lose my mind, but it has. It feels like a stupid excuse. “Oh the 22 weeks I endured high levels of poison has made it so I can’t go a single day without forgetting multiple things.” I wonder all the time if cancer muggles believe me or if they think I use cancer as an excuse for everything.

The moment that question slipped out of my mouth I knew the phrasing was wrong. I have cancer. Not had. Why would I say that?

“Well, I mean have. Did she tell you I have cancer,” I rephrased. I don’t remember her response. I was caught up in my foggy thoughts and my mind went back to five days prior: Wednesday, July 19 at 7:34 am I received my CT scan results and things once more changed for me.

Where did I “learn” the definition of stage IV cancer? Was it in movies? TV shows? Dramatic retellings from friends of friends who were diagnosed? The reiteration of stories in the stage IV breast cancer group I am in on Facebook? Loved ones literally dying from stage IV cancers around me? Somewhere I learned that stage IV was a death sentence and that stereotype haunts me like a ghost. Somewhere I had this reinforced in my brain so much so that I both believe I am very close to dying at all times and somehow I am very much alive.

Every day since I finished chemo and radiation feels like the closest I have been to who I was before cancer. Here I am, eight days away from celebrating my chemo anniversary and I am still struggling with some things, but a lot of my journey feels like a bad dream. Sure I walk around titty-less and my hair is still rather short, but unless you know me you might not know that cancer is my sidekick in life. I am grateful for every cell that is healing and has healed, but I am not pretending that something ominous doesn’t live in me anymore. However, my general day-to-day functions no longer revolve around cancer. It just is kinda… there? I don’t truly ever forget, but I can get lost in the mundane routine of life and cancer isn’t a doom cloud anymore. It is just a cloud.

How lucky I am to be alive.

I had told myself that when it was time to scan me that either cancer would be everywhere in my body or that it would not be there at all. It was very binary. I had done the poison, had my boobs hacked off, and I am still consuming poison so it felt like a very either or type of scenario. But my results were not binary.

1. Interval bilateral mastectomy and right axillary node excision. No evidence of new or progressive disease in the chest, abdomen or pelvis. 2. Stable to diminished sclerotic bone lesions consistent with metastases.

MyChart Official CT Reading Results

It is true at first glance that these results read that I am no evidence of active disease (NEAD). I should be THRILLED. And I am. But the flood of emotions I felt as I read my results made me angry. This is never ever fucking going away.

Bones: The previously described rounded sclerotic lesion in the anterior superior aspect of what is again designated the L1 vertebral body is stable in size, measuring 1.4 cm on series 602, image 66, but is decreased in density compared with previous CT imaging. Additional small sclerotic lesions in the T9, T12, L2, L4 and L5 vertebral bodies are similar in appearance, while additional previously visible sclerotic lesions at L3, L4 and L5 have diminished/resolved. There are stable small sclerotic foci in the femoral heads. No new lytic or blastic lesion is evident. No fracture or malalignment.

MyChart Official CT Reading Results

I cried. I cried sad wet tears of happiness and sad wet tears that drowned my happiness and replaced it with February 21, 2022 rage. I had told myself this narrative that if you do all the things right, you get the cookie of being cancer free and that is just simply not in my life cards. The narrative I told myself was there to protect me; the armor I suited up and wore to endure chemo. Sadly, it is not armor that fits or can be worn in survivorship for me.

I recognize that stage IV is merely a classification and not a death sentence, but it feels like one when you are trapped in a body that is doing everything it can but cancer cures do not exist. Cancer treatments and medications can do a lot, but they do not cure. We pray, we hope, we cling on to anything when diagnosed with cancer. It is how people mistake us for being inspirations when we simply just want to live and will do/think/believe anything will cure us of this evilness. But the only results we can ever get that is close enough is NEAD. Or remission. Or whatever the fuck you want to call it. But once those little cells start fucking around, you are never safe again.

So I celebrate this milestone and honor the parts of me that are happy to be stable and devour life like it is the last pie slice at Thanksgiving. But I am always wondering when the shoe will drop and when my stage IV goes from being a classification to death knocking at my door.

Today’s song lyrics of the day are brought to you by Liza Minnelli.

“Well, all the odds are, they are in my favor
Something’s bound to begin
It’s gotta happen, happen sometime
Maybe this time, I’ll win

‘Cause everybody, oh, they love a winner
So nobody loved me
‘Lady Peaceful’, ‘Lady Happy’
That’s what I long to be”

– Maybe This Time, Liza Minnelli

Fast facts (if you don’t have time to read the full post): Big things have happened since my last report! I had my first Zometa infusion on June 5 (which was a fucking shit show) and yesterday I met with my oncologist and a CT scan is in the works! No need to worry, this is just a follow up scan since I am ~high risk~ so hopefully there is nothing to report. I also got the okay to drop one of my prescriptions! The plot thickens.

Countdown to last day of oral chemo: 225 days

TO THE LONG VERSION!

I’m doing and experiencing many things for the first time, like a baby new in the world. Robin songs feel like hits of dopamine. Sips of cold beer surge through me the same way a legal drink of turning 21 did. Laughter is medicine for my soul and every new food feels like the best thing I’ve ever eaten. My hair is short, but feels like me. I have a garden full of tomato plants growing and it feels me with such pride and glee. I am making art again and it feels like it is the most authentic it has ever been.

My life didn’t end with my diagnosis. It just started over.

But like life before cancer, some things aren’t so great. My dresses droop on my chest, exposing my scars and radiation dot tattoos. I randomly grew a tailor’s bunion on the outside of my foot which appeared suddenly and fucking hurts. Normal every day tasks exhaust me. My vagina is drier than the Tri-Cities in the middle of July on fire warning. The heat exasperates my hot flashes. And I cannot shake the feeling that because things are improving, healing, and making progress that the shoe is about to drop. Because the shoe always drops.

My oncologist finally placed the order for me to get a follow up CT scan under the guise of me being high risk and all I could think about was what if the cancer has spread. My labs are normal. I am on oral chemo. I feel healthy. I am healing well from radiation and chemo. There is no reason to assume the cancer has decided to claim another organ as home. But the panic will forever exist.

It is easier to operate under the assumption that everything can be shitty when it has been shitty. Stage IV leaves little room for hope at times. It is a suffocating blanket of dread, yet it is a tragic gift of urgency to live life so fully it bursts at the seams.

Recently I stood in front of the TJ Maxx changing room mirror naked with my scars lit up by the exceptional lighting. Normally I would take advantage of such bright lights to find a good black head to remove between modeling various finds but instead I ran my finger over my keloided scars on my chest. I had walked in with ten things to try on, the options feeling endless. And then my finger stops at where the end of the scar meets my pale skin, like sand meeting the red sea. The confidence slowly drains out of me. My scars mutate from the connections that have held me together to a gate holding a monster back.

I shove the feeling of ugliness so far down some days that it appears I don’t give a fuck what I look like when I wear dresses that blatantly put my boobless chest on display. I wonder if people think I am nuts to not wear a prosthetic, to so confidently act like something isn’t off with my body. It is the moments in the TJ Maxx changing rooms staring in the mirror that the monster grabs me. I belittle myself. I become insecure. I am not pretty. No amount of layering can hide what has happened. The red deep lines bleed larger on my skin while the lights intensify. Sweat begins to gather on my scalp and in one sweeping motion my whole body is taken over by anxiety and a hot flash. White noise.

“I have mine on. Are you ready?” asks my best friend in the room over.

“Coming,” I say. I put on the matching hot pink jumpsuit we picked out together. I walk out and try to avoid looking at myself in the mirror, but instantly look at my chest. She does a half turn, admiring the back side of her jumpsuit. It looks great on her. I look like a bubble gum cancer monster. I hate it.

I don’t get the jumpsuit. Or the other nine items.

Yet, I end up wearing a dress the next day. And I am back to shoving the monster down. The bird songs resume. I want to spend time with loved ones and laugh until I cry. The softness of my cats feels like the best feeling in the world. The sight of bugs in my garden bring me joy. As I straddle the fine line of living life so fully and hating myself for something I could never control, I wonder how two worlds can exist simultaneously. Can I ever fully leave behind the one that makes me feel like shit?

I don’t know. But I keep trying.

************************************************

A month ago tomorrow I had my first Zometa infusion, which I covered in my previous post. If you’re not in the mood to read it, basically this infusion will happen twice a year for the next three years and help strengthen my bone density. I delayed it in May because I didn’t know it was happening and I was not prepared. June 5 I showed up prepared with my handy dandy chemo bag, my mom, and some rainbow cupcakes to share with my faves because it was ~birthday week!~

All I wanted for my birthday this year was to have a chill day and week, but instead I got fucking bone pain. And it was not like bone pain when I had those damn shots during the red devil treatment. That was a fucking walk in the park. This was, by far, the worst pain of my life and that is saying a lot given the weird shit that has happened to me in the last year. (Remember ER visits #1 and #2 with my ingrown hair on my head? Yeah, worse than that!)

Getting the infusion was a piece of cake, like every infusion I’ve ever had. Hook me up, deliver the poison, and off I go back out into the wild like a dolphin that has been tagged for research purposes. I went to work after. Felt normal. But the real trouble began when I went home. I started to feel a bit off, my bones feeling a bit achy. I was told that I could experience bone pain and flu-like symptoms for the next 48 hours but then I would be back in tip top shape.

Worst. 48 hours. Of. My. Life.

I went to work Tuesday morning and tapped out after two hours because the pain was creeping hard. It is not like you can take some ibuprofen and call it a day with bone pain. This shit is next level. The pain was unreal. It was chemo bone pain times a million. My whole body screamed. I napped majority of the day. I saw some relief by late evening but woke up on my 31st birthday still feeling like shit. By 3:45 pm that day, it was gone like a tornado disappearing after the storm. Weirdest fucking experience of my life. And most painful, too. Sure not looking forward to that again in December.

My oncologist casually asked me yesterday during my appointment how Zometa went. I told her it was the worst pain of my life and it was awful but I felt fine now. “Good. Are you taking your vitamins?” she asked. She literally brushed off my experience of hell with a question about vitamins. And that basically sums up the experience of having cancer. If you’re not dying, continue with the scheduled programming.

Cooooooooooooooool.

In other news, she sent in an order for a CT scan, told me for the third time that she will start seeing me every two months instead of every month, and said that I can quit taking my heart medication since my heart rate has been continuously low the last couple of times I have come in! One med down, one to go.

In short, my mental health is still a roller coaster of emotions and my health is questionably good. I live to see another monthly appointment.

Here are some photos from the past two months!

Today’s song lyrics of the day are brought to you by Steve Aoki.

“I’m a good pretender
I’m not really cool
I’m a good pretender
‘Cause I’m just like you
I do not belong here
You all clearly do
But I’m a good pretender
So I’m just like you”

– Pretender, Steve Aoki, Lil Yachty, AJR

Fast facts (if you don’t have time to read the full post): Another month down of oral chemo! My body is stabilizing, but fatigue is still kicking my ass. It makes me wonder how much of my fatigue is my body still recovering from chemo/radiation and how much is my new meds? Will I be like this forever? I have my first bi-yearly infusion of Zometa on June 5. I had a close call and almost had to do an infusion without emotional support humans and my chemo bag/pod supplies. Luckily the nurses like me and helped me advocate to get it moved to next month.

Countdown to last day of oral chemo: 273 days

TO THE LONG VERSION!

I’ve always dreamed of having a large yard with a massive garden. There is something extremely gratifying about picking an overly ripe tomato out of your personal paradise, drizzling it with a hose to remove the dirt, and biting so deep into the flesh that the thick ooze of juice and seeds trickle down your neck onto your perfectly white tank top. You know the risks of eating a tomato while wearing white, but it is summer. You are in your yard. Who the fuck cares? Also fuck your white tank top.

I tried to build a small fence garden when I lived in my tiny 496 square foot studio, but failed miserably. I think the nonstop direct sunlight and concrete did not do me any favors or offer any relief to the delicate plants. Then when I bought my house in December 2020, the dreams were revitalized with the massiveness of my back yard. I dug some holes along the fence, not realizing that I would need to do more than just dig a fucking hole and plant a plant in it, but I was just too excited by the fact I could DIG A HOLE IN MY OWN YARD. Out of two tomato plants, I only got one tomato the whole summer. Major fail.

I told myself summer 2022 would be the year I’d have the garden of my dreams. I just needed to do the research and lay the ground work for a jungle of tomato plants! But those plans came to a screeching halt on February 21 when I received my diagnosis. My dad bought me a standing garden and helped me build it when I was going through treatment, but the single tomato plant didn’t produce and I was too tired to care for it. So I looked towards summer 2023 with great earnestness.

When March of this year rolled around, I only had one thing on my mind: gardens. Well, that is a lie. I had a lot of things on my mind but for the sake of my house and yard, I could only think about gardens. There was just one problem: weeds had taken over the entire back lawn. There was NO grass in sight anymore. Although I am very pro bees, the crab grass/dandelion/mystery weed combo just…. sucks. So before a garden could even be realized I had to solve the problem of having a space to even put raised beds without them being overrun by my new unwelcomed yard guests. Cue mission “ROTOTILL THE SHIT OUT OF THE YARD.”

I thought this would be a day activity that could be accomplished in a matter of a few hours, but actually rototilling is a lot of work and a lot of HARD work. But we finally got enough of the yard done that I could set up my first raised bed and it left me in tears, which I knew might happen but it was for a reason that I didn’t expect.

When you slow down in life, you might start noticing things you didn’t before. This might be the smell of the trees in the spring or how your cat looks like a shrimp curled up on your lap mid nap on a Saturday afternoon. And then life picks up again and those little details fade into the background of the daily grind. But what if those small things became your every day experience? I feel like cancer has made me slow down permanently and all I see are things I was too busy to appreciate before my diagnosis.

The sun was setting in the yard and I was admiring my first raised bed with four tomato plants nestled tightly into the fresh compost. What a beautiful sight. But then a robin flew into the yard and perched on the wood of the bed. I love animals so seeing a creature hanging out in my yard will always bring me joy. Out of weird curiosity, I googled the symbolic meaning of a robin and this is what came up first: “For centuries, this tiny bird has been the symbol of good luck, happiness, rebirth – and sometimes even as a messenger for lost, loved ones. There are tales stretching back to Norse mythology where the robin is the protector from storms and lightning.”

At this point I am getting choked up because this yard just felt like a symbol of my life: what was once a fresh grassy area was overtaken by weeds and in order to start over, I had to destroy and rebuild. But also this little fella was bringing luck to my yard, so maybe a blessing of a fruitful harvest is in my future? Me being the nut that I am, maybe the bird is finally giving me some good luck too. I sure as hell need a sign that things will be on the up and up soon.

Anyway, finally my simple dream of growing my own tomato plants to make pizza sauce and salsa is coming true. It is all I have wanted for a very long time. I can’t help but feel immeasurable gratitude. I literally go out into my yard and stare at my plants, willing them to grow tall and strong. Every leaf brings me joy. I am a happy little farmer.

What I am NOT happy about is surprise infusions. I mentioned last time that there was a new infusion on my horizon called Zometa. According to breastcancer.org, “Zometa typically is used to reduce bone complications and bone pain caused by advanced-stage breast cancer that has spread to the bone.” This drug limits the activity of certain bone cells which help cause the bone weakening and destruction that can happen when breast cancer spreads to the bone.

I am taking this drug for two reasons: I have bone mets and because my cancer is hormone positive, I take hormone blockers. A consequence of a lack of estrogen (thus being in menopause) is bone loss, osteoporosis, and fractures. Ya girl is not interested in breaking a bone. I have gone 30 years in my life never breaking one. It is a streak I am proud of and one that I am not willing to break any time soon. Basically this drug will help strengthen my bones but also there is some evidence from research showing that Zometa may help reduce recurrence. (This article is great if you want to do a deeper dive.)

I will need to do infusions of this drug twice a year for about three years. Last month when I met with my oncologist she casually mentioned I will most likely do my first infusion in May or June. Now, I generally get notified when infusions or changes are happening to my schedule so imagine my surprise when I went in this month for my routine blood work and stomach stabbing only to be told that they also wanted to infuse me! I can’t get infused without my chemo bag. I need my chemo pod decor! I also need emotional support humans to help plot orchestrated plans to steal oatmeal and share chemocuterie with.

Real talk: I miss chemo sessions mainly for the havoc I liked to create and the friendships I made. I don’t miss chemo. That part sucked but the snacks were lit. So I begged the lab nurses to let people know that I couldn’t get infused because I didn’t ask for the time off from work. Little did they know that my work supports me and would have been happy to let me stay. I just wanted to have my lights for my IV pole. And that is how my first Zometa infusion was moved to June 5.

In other news, my labs are showing that my white blood cell count is barely within range. Glad I am not tanked anymore (special shout out to shingles for fucking me up.) I still need to avoid sick people and large gatherings, but I have started to go to the gym more often. Physically, I am feeling more like myself. Mentally, I am still a lost leaf in the breeze. What are my goals? How do I plan a future knowing I have this chronic illness that will forever follow me? How does one plan with cancer?

That might be a good book. It is just a single page that says, “How does one plan with cancer? One day at a time.” And that is it. That is the pro tip.

Today’s song lyrics of the day are brought to you by Lips.

“So it would mean everything to me
You can fight but you won’t always win
Somehow life finds a way to beat you
But I’ll come join you in the ring
Guess it shows just how much I need you”

– Everything To Me – Adventure Club Remix, Lips, Adventure Club

Fast facts (if you don’t have time to read the full post): Last month I was discharged from the radiation clinic! I don’t have any further business to conduct with them at this time. Yay me! Today I went in for another monthly injection and lab work. My oncologist is pleased with my labs. My white blood cell count continues to improve and all my other numbers are stable. Goooo me! We will be introducing a new infusion to my regiment either next month or in June called Zometa to help with bone density loss.

Countdown to last day of oral chemo: 310 days

Sometimes I try to daydream what my life would be like if I didn’t have cancer but the farther I get away from February 12, 2022 (the day before I felt the mass in my breast), the harder it has become to conjure such daydreams. I cannot imagine a life without it or what life was like before it. If that makes you sad, it makes me sad too. But not all parts of a life with cancer are depressing. “But Madison, cancer is terrible!” Ah, dear reader, it really is but I found some glowing worms in the dark.

I was house sitting for a good friend last week and part of my daily routine was taking her dog for a walk. Saturday was my last day and it was a very warm afternoon, a perfect day for a stroll. We take the same route every time: cross the street to the school, turn right, and go all the way down to Road 36 until we hit the stop sign. Then it is back the way we came. It clocks in around 17 minutes depending how many times we stop to smell invisible pee spots and fix the leash. The perfect walking distance.

As we passed the school and approached the houses, I could see a small party in someone’s backyard. I am not a creep, but the kind of fencing surrounding the houses doesn’t fully block my eyes from seeing general blobs of activity. Someone had rented a jumping house. You could hear the giggles and screams of pure joy from the kids. As we got closer, the most delicious scent of hot dogs hit my nose. Holy fuck. Sweaty meat links on a BBQ seriously should be a candle scent. Call it “Meaty dreams.” Get it? Instead of sweet dreams?

Buh dun kissssss.

Paloma decided to stop to sniff the same fence we had sniffed all week while I sniffed the air and the most insane sense of joy and calmness filled my lungs. How beautiful it is to feel so alive. My body wants to kill me and yet I am still here, smelling spring scents! I didn’t get to smell hot dogs on the BBQ last year. I didn’t get to housesit for friends or walk dogs. I was laying on the couch this time last year, fighting for my life. I was bald and kinda miserable, but also planning a massive charity event?? Weird. And now I am kind of fighting but in a different way (fighting the urge to not steal hot dogs from a gaggle of children) and not planning a massive birthday party for 200+ of my closest friends. Life is wild?

It is mind-boggling how much we go through. How much we hurt ourselves to heal. It’s such a mixed bag. The side effects feel never-ending. We live in a constant state of fear and stress. And through all of that comes an incredible life changing outlook and appreciation for life. Because when you know what it feels like to be so close to dying, living just feels so sweet and just so simple. I am glad I am here on the other side. It was impossible to picture myself here, the same way it is impossible for me to not see myself anywhere else but in this moment anymore. Is this what it feels like to process grief?

My grief feels like a Jenga tower that is nearing the end of the game, when the removal of any block threatens the collapse of the tower. Every time I try to process a part of my grief, I fear toppling the tower. All facets of my life seem to be connected to my diagnosis right now. If I try to process my self image issues, it is tied to the loss of my breasts and strength, which is connected to having cancer. If I try to process my inability to remember details about others and how painful it is to not retain information, I can point at the white oral chemo bottle on my counter. Cancer again. Marriage issues? Definitely some elements of cancer that have made things worse. Cancer. Cancer. Cancer again.

So fuck it. Maybe I let the tower fall. Then what? I think I fear that the most: Then what?

I don’t know.

I guess none of us ever know. I didn’t know over a year ago this is the type of shit I would be talking about (Jenga, hot dogs, and cancer) but here we fucking are.

In other news, I had a follow up on the radiation side of the clinic last month. My radiation oncologist looked at my well done skin sample and was pleased with her cooking skills. I am healing nicely and was successfully discharged from the clinic. Hopefully I don’t need any more invisible poison sessions in my future.

Today I had my monthly stomach stabbing and visit with my oncologist. My numbers continue to climb and stabilize. It seems my body is adapting well to oral chemo (yay but fuck oral chemo) and we can move into another phase of my maintenance protocol: bone density infusions. Twice a year for the next three ish years I will need to come in for an infusion for a drug called Zometa. According to Drugs.com, “Zometa is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures.”

So brief refresh: I have estrogen receptive positive cancer, meaning my cancer eats estrogen to thrive. As part of my treatment plan, I get monthly injections (my Zoladex injection) to my stomach to put my ovaries to sleep, which makes me menopausal. I am also on a hormone blocker that further blocks estrogen in my body. The lack of estrogen has its own side effects, one of which is brittle bones and osteoporosis. To help combat this, Zometa comes into play.

I will do a more in-depth review of this drug but what is interesting is that studies show that these infusions can help keep additional bone mets at bay according to my oncologist. I will have to do more research but the more we can limit metastasis, the better. It sucks I have to take more drugs, but it is a better alternative to dying.

Oh and one more thing about today’s visit was my oncologist was like you are cleared to start exercising again to help combat the fatigue that comes with oral chemo. Literally the last two times I have seen her she has told me I can exercise and I want to be like lady, I never stopped. She was like oh it can help combat the fatigue and if you don’t exercise it can get worse. The predicament I am in is that I am pushing myself FULL THROTTLE right now and sleep just doesn’t seem to cut the fatigue. I am exhausted when I get home from work. I constantly feel like I am swimming upstream. I want to take a vacation from my life and sleep for many days. And the only advice she can give me is to keep going.

So keep going I will, dammit.

Today’s song lyrics of the day are brought to you by Riot Ten.

“Lift your voice and say
No worry, no way
It’s gonna be okay
It will be alright”

– Voices, Riot Ten