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

Fast facts (if you don’t have time to read the full post): Yeah, yeah, yeah. It has been a minute. If you don’t already follow me elsewhere, you might have thought I was dead! Ha! I’m not dead YET! But my soul is tired. My body is tired. Oral chemo sucks and all the side effects that come with it suck. Like being sick with shingles. Yup. Let’s talk about that.

Countdown to last day of oral chemo: 332 days

TO THE LONG VERSION!

Writing has been hard lately. What do I say that I have not already said? My existence is free from the constraints that came with chemo and radiation. A year ago, I was a prisoner trying to survive the things that were made to help me survive. Now I am busy supporting myself while my body adapts to the oral chemo meant to prolong NED. It is its own kind of battle, one riddled with life land mines disguised as shingles, salty tears, and a deep need to get closer to getting my boobs reconstructed.

I take two chemo pills in the morning and two at night. This “magic” medicine forces cancer cells to kill themselves. Sometimes other cells that are minding their own business might die too, but they are less likely with this medication than chemo infusions thank goodness. But these pills still induce pangs of PTSD and have resulted in me getting really sick twice, and in ways I did not expect.

The first three weeks of oral chemo I fought a tough battle against a brutal cold. It took me FOREVER to shake off, which left me perplexed because I kicked COVID’s ass twice (TWICE!!!!) while I was on chemo and doing radiation. But a cold beat me up and spit me out on the streets. I went to the express care clinic because I was worried about my lungs. They were clear by the way. That was my first cold in three years and it was awful. I was so snotty, exhausted, and coughing up a lung. I had initially convinced myself it was a side effect of the oral chemo, but it turned out to just be a virus.

The moment I started to get better, I developed pain in my lower right hip and back. I thought maybe I had tweaked it while exercising, but the pain would not go away no matter how long I laid on a heating pad or pounded it with the handheld massage gun. Of course my mind then went to mets and cancer in my hips. How fucking terrifying, but definitely not outside the realm of possibility. But even though my panicking self drifted into nightmare territory, something in me felt like something else might actually be wrong…

I began to develop little white zit-like dots all over my vagina and my hip. A cluster of red dots had formed where I had originally felt pain in my lower hip/back. In a matter of hours after noticing the white dots, I was in excruciating pain. It felt like my vagina was being stabbed over and over again with a hot needle. A couple of Google searches resulted in the short and simple answer of shingles, but I was shocked. Shingles?! Seriously????

Sure enough, a late night ER visit due to the inability to sleep through the pain resulted in the official confirmation of shingles. I learned that shingles (a form of the herpes virus) can be triggered by a stressed immune system or sometimes certain cancer medications, both of which I was/am experiencing. I was prescribed some antivirals and told to watch out for infection as the pustules pop and scab over on my lady bits, avoid immunocompromised people and babies, and warned that my symptoms could last for months.

Cool cool cool cool.

I am not sure if it was the universe wanting to toss me a bone or was over torturing me, but the antivirals kicked in after the first couple of doses. I had to take 800 mg five times a day for seven days. By the end of the first day, I already felt some relief. Although antivirals are not a cure (your body basically has to fight it off) they helped reduce the pain and advance the war my body was enduring to bring it to a close. I have been lucky to not experience any more pain since then and the shingles are all scabbed over. But holy fuck, if you qualify for the vaccine I would recommend you get it. Shingles are fucking stupid. They hurt!

So my body was wrecked from starting chemo, knocked down more with a cold, and hit a high note with shingles. The antivirals made me feel shitty. I am finally back to my normal medication schedule and I feel like my body is finally leveling out on oral chemo. I still hate it (thus the countdown to when I can be off these meds) but it may just be more tolerable as I was told to expect the longer I take them.

I saw my oncologist this past Monday and had some bones to pick because I had heard that I could end up taking this oral chemo forever. And I literally do NOT want that. I confronted her about it and learned that because my cancer is still marked curative in nature, I only have to complete a year of oral chemo. Now if my mets were to spread or had been worse than the three tiny lesions in my spine that eventually responded to chemo, then I would have to take them forever. And the plan is to scan me early summer to see how cancer-free my body looks. I plan to take those scans and get a second opinion on my case from the Seattle Cancer Institute. I trust my doctor. I think she is great. But I also just want to double check in regards to my long-term plans of care and ask questions about fertility.

I want to be positive. I need this hope. I am hanging on to it for dear life. The estrogen blockers don’t bug me as much. But the oral chemo does. I have noticed since starting it my hair growth has slowed down. I struggle with muscle recovery post-workout more. I am fatigued again like I was during chemo. I sleep more. That gap between ending radiation and starting chemo was a glimpse of who I can be this time next year and I want to hurry the fuck up and get to that point. Granted, I am SO grateful I get to be a somewhat normal human this year and enjoy my summer. I look forward to gardening and swimming and making friends with the bugs in the soil. But imagine how much more I can do next year!

But life has been more than tending to the woes of chemoland. I’ve been kind of mum about the status of my marriage mainly because I blasted the crime of infidelity everywhere and now we have chosen to try marriage counseling together in hopes of repairing what has been broken. Oops? I guess I share this to normalize the messiness of relationships. Like most things in my life, not everything is black and white or as simple as I thought it would be for me. I don’t know if therapy is enough to repair, reconcile, and rebuild, but I guess we will find out. In true fashion, all aspects of my life must be lived on hard mode, my relationship being no exception.

In better news, I have found space to celebrate life with those around me through attending birthday parties, dinners, and trying to be better at responding to texts. I am still pretty awful, but I am acutely aware of my shortcomings. That is the first part of recovery, right?? I think some of it is tied into exhaustion. My body is tired. Hell, my brain is tired. The last year has been a mind fuck. I am not showing up in all of the ways people deserve right now or rather all of the ways I want to show up for people. I feel like I am still failing in a lot of ways. But I will keep trying.

Oh! I got my eyebrows microbladed again. Something about having eyebrows just makes me feel more with it, you know? I am in a season of trying to find ways to care for myself and my soul. My life is still a dumpster fire, but it is less out of control flames and more like slow burning embers. We still need to keep the fire extinguisher nearby, but we could make s’mores.

Here is what I sort of have been up to:

Today’s song lyrics of the day are brought to you by The Be Good Tanyas.

“Sometimes I don’t know where this dirty road is taking me
Sometimes I don’t know the reason why
So I guess i’ll keep gamblin’
lots of booze and lots of ramblin’
It’s easier than just waitin’ around to die”

– Waiting Around to Die, The Be Good Tanyas

I have cancer. Fucking cancer. Fucking fuck fuck. 

Fuck.

I hope the more I say it and the more I type it, I can grab hold of the magnitude of that word. It feels so far away. None of the questions I have matter at this point in time. How this happened or why I didn’t know until now gets in the way of me asking me the questions that can save me. What do we do next? Where do we go from here? I can’t help but mourn those questions that won’t receive answers. I am not an overly analytical person since I am very heavily driven by emotion, but I keep looking at this situation analyzing how my cells went rogue and I had no idea. 

Excerpt from 2/22/2022 – Day 1: Fuck

The version of me in 2022 was already so wise. “How this happened or why I didn’t know until now gets in the way of me asking the questions that can save me. What do we do next? Where do we go from here?” That certainly did not stop me from screaming into the doom cloud void that is cancer over and over begging the universe to tell me ~wHy~ this was happening. I still sometimes wonder why but I scream less now. That is an improvement! Imagine what I can accomplish by this time next year!

365 days of cancer. One whole fucking year. Happy fucking cancerversary to ME. I’ve seen all the amenities hell has to offer and I’d like a refund in the form of returning my boobies, please.

Like today I really miss my nipples. Who would have thought you could miss something like that?! NIPPLES! Next time you nip out in your party dress, let it happen. Laugh. Say, “Good job, you perky little beasts!” Because YOU have nipples and I never will ever again. Okay, I will lay off the awkward guilt trip. But do compliment your nip nops. Nipples are cool.

Someone asked me why I celebrated the day I was diagnosed. It is a weird date to acknowledge. It is my death date and my birth date. But a cancerversary is so much more than that. Every milestone on a journey with cancer is worth celebrating, honoring, and acknowledging no matter how big or how small. Surviving a year as technically de novo stage IV (a new term I learned meaning the first occurrence of cancer in the body) is a big fucking deal. Yeah, I know they wrote me down as stage IIIa but this whole time I was stage IV. Those mets in my spine have been there since my initial scans last March. My oncologist said if it was cancer, the chemo would kick it. Scans after chemo in August showed no change. Scans in November showed change. Like I get cancer and its like a form of a worst case scenario. I can’t go down in staging. I guess if I am going to get cancer I might as well do it really well.

Back to “why.” Not everyone who gets a diagnosis gets to make it through. I lost two of my aunts with cancer during treatment. It was a literal reminder that cancer at any time can stop responding to treatment. I feel like I have said this a lot lately but you can do it all “right” (treatment, eat well, exercise, be a good human, etc.) and it just might not be enough. So every day is a gift and I love celebrating life. And honestly I will justify almost anything as a reason to buy myself a cake. In the past week I have bought myself two cakes.

Life is short. Eat the fucking cake.

Anyway, I am here. I am grateful my body is responding to medication and I hope it does for a long time. But today on my cancerversary I also mourn those who didn’t make it. My aunts. My sister’s mom. My grandma. My friend’s mom. My co-worker’s dad. Countless people have not made it. It fuels me with grief and fear that is unexplainable. I keep wondering when my expiration date will come. Will it be in the form of cancer? Or something more sinister like a Canadian goose attack or McDonalds collapsing on me during an earthquake? I will never be able to understand how I am still here and they are not. Life is not fair. Cancer is just simply not fair.

So I celebrate 365 days of doing what I am told by smarter humans than me. I grit my teeth every time a needle punctures Harry Porter and the Prisoner of Cancerban. I chase my pills with water knowing they are doing everything they can to keep me alive. I tell people how I really feel. I laugh when I want to laugh. And I share every part of me because if I am not here, I want people to have something of me to hold on to when I am gone.

Cheers to 365 more days.

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

“Don’t you know I’m still standin’ better than I ever did?
Lookin’ like a true survivor, feelin’ like a little kid
And I’m still standin’ after all this time
Pickin’ up the pieces of my life without you on my mind

I’m still standin’ (yeah, yeah, yeah)
I’m still standin’ (yeah, yeah, yeah)”

– I’m Still Standing, Elton John

Fast facts (if you don’t have time to read the full post): Last Monday I met with my oncologist and signed all the paperwork to start oral chemo. I took my first dose Tuesday morning. Since then things have been rough. Combine my side effects with seasonal PTSD of what occurred this time last year and you have a very physically and emotionally tired cancer patient.

TO THE LONG VERSION!

Oral chemo sucks. It just sucks. The first and biggest way it sucks is I literally gag every time I put those dusty olive green pills in my mouth: once at 8 am and again at 8 pm. I have been told in more ways than one that it is very important that I take my doses consistently, no more and no less than what is instructed to achieve desired results. I like results and I like structure. Next!

The second big way it sucks is it literally illicits a strong emotional response from me every time I need to take them. On the first day I hated what it represented: a return to poisoning myself. Granted, I am poisoning myself in other ways already but chemotherapy just hits differently. It was like going to chemo infusions all over again except this time I don’t get free cheese or get to be held by my emotional support humans or nurses. I cried for several minutes while holding the pill bottle. Here I was, a year out from diagnosis and I still have another year of hard shit to endure. It is all hard and the levels of difficulty vary in physical to emotional and psychological form. Lynparza is mostly psychological with a side of physical. I’ve learned to deal with my body’s responses to poison but I am still trying to get over how psychologically I have been fucked by this whole process.

After crying, I threw the pills back and chugged water as fast as I could. The green pills are two of the five I take every morning. Nothing says “rise and shine” quite like a medical routine. I didn’t feel much the first couple of days. No side effects. No surprise diarrhea attacks. (I was very prepared for surprise poops.) I thought maybe I would be a rare specimen and get to blissfully enjoy taking scary pills with no repercussions but fuck I was wrong.

I think my cells finally figured out what is going on and they are not happy. Friday the mild bouts of nausea hit along with a weird sore throat and a cough that reminds me of the lingering cough you have a few weeks post-COVID. Oh and fatigue. The fatigue sucks so hard. The paperwork says “Rest whenever you need it” as the cure for that side effect which is funny to me. Practical advice but impractical when it is 11:30 am on a Thursday at work and I want to nap at my desk. Simple activities easily trigger fatigue like washing dishes or standing for too long. I was also advised to sleep 7-8 hours per night. Again, great advice but that means going to bed at like 8:30 pm so I can wake up with enough time to exercise and do my morning routine. Exercise and drinking lots of water are also other ways to mitigate side effects. Simple enough. But what happens when none of those things work? And you are just dysfunctional? And your body screams at you that it gives up?

I don’t know how I am going to survive the next year as a functioning human. Insert rant about capitalism and healthcare here.

Long story short I am not a fan of oral chemo. It is triggering and makes my throat hurt and I feel like I am back to being a pile of sludge. I have 359 days left of this misery. The things I do to survive, am I right?

I had high hopes last week of recounting several cancer milestones that led me to my official diagnosis, but the fatigue set in and I became useless. After Discovery Day on February 11, I had an ultrasound and a surprise mammogram followed by a biopsy on February 18. In a nutshell, those were emotionally challenging days. Knowing what I know now, I should have known it was cancer when the ultrasound tech moved her little wand down to my arm pit and said, “Did you know you have a lump here as well?” BIG CUE. Lumps on lymph nodes in the presence of a lump in your breast is a big fat red flag. And here we are, the eve of my cancerversary and I am emotionally scrambled. I am happy I am alive, still fucking pissed about the whole thing, and I really miss my boobs.

I bought myself a cake for my cancerversary that read “Happy Cancerversary” and my friend asked me why I would want to celebrate such a dark day. Fair question.

I can only speak for myself, an AYA and stage IV thriver, but I celebrate this milestone because there are many of us who do not survive cancer and surviving is more than doing the treatment and being done. It is my death date and my birth date. From the minutes and seconds of the last year I thought I would not survive to the long stretches of time that melted together to form a day, a month, and even the past year, I made it. A single phone call was the catalyst of a journey nobody can ever imagine. I celebrate survivorship in honor of myself and all of those who do not get to celebrate. I will never take for granted life and the power tiny invisible cells have in changing the courses we are all on.

We took a few photos of me with my cake to commemorate the occasion. She cooked me shrimp primavera and we ate dinner with her family. It was intimate and warm and nourishing to my soul. In my head I thought this occasion would be a loud party surrounded by loved ones, but instead it was an opportunity for me to just simply acknowledge this moment in my life and reflect on what this new ritual actually means to me. Sometimes I get too focused on sharing everything with everyone else that I forget who I am in that equation. A cancerversary is for me. Everyone else is a bonus.

I feel like this blog post was not very strong and that I literally rambled. My writing powers are not great today. My brain isn’t working and I had a hard time centering my thoughts. Too many tabs open and I am emotionally numb about tomorrow. Whooops. I will try again tomorrow.

Today’s song lyrics of the day are brought to you by Romy and Fred Again…

“You’ve been so strong for so long
You learned to carry this on your own
Let me be someone
You can lean on

I’m right here, I’m right here
I’m right here

You don’t have to be so strong”

– Strong, Romy, Fred Again…

Fast facts (if you don’t have time to read the full post): Tomorrow I have shit ton of appointments. In total, I have five appointments and four of those are at the cancer center. I will do labs, go over consent paperwork for the oral chemo, see my oncologist, and get injected with my hormone blocker. I get a couple hours off before I have to go to the eye doctor. Thinking about tomorrow makes me tired. And anxious. I am not looking forward to starting oral chemo Tuesday.

Yuck yuck yuck.

TO THE LONG VERSION!

On February 11, 2022 I was sitting at work adjusting my sweater over my bra when my fingers grazed my right breast. I felt something hard. Confused, I adjusted my bra once more thinking my mind was playing tricks on me, confusing the firmness of the bra for something more sinister. But the mass was not my bra. It was a lump in my breast.

It was Friday so there were not many people at work but luckily one of my friends was working. I ran to her office, closed the door as tears rolled down my cheeks. “Please tell me what I am feeling is not real,” I begged. She performed a breast exam and firmly told me to call my gynecologist’s office to see if you can get in for a more formal exam. I had my yearly exam scheduled and was a few weeks out from my appointment, but I knew I couldn’t wait that long to get answers.

I called the office and a provider was available to see me an hour later. It was a full on appointment so I had to strip down and get poked and prodded at all over my body in the name of women’s health. The breast exam part left me in a fit of anxiety as she empathetically explained to me that she wanted to refer me to get an ultrasound. She attempted to comfort me with the potential idea that it could be nothing, but her eyes told me another story: I should be worried.

It was a Friday so I did not get a call to schedule an appointment until Monday, February 14. I took the earliest appointment I could: 7:45 am on February 15. Little did I know that my life was about to change forever.

How cliché. But it did!

I thought these ten days leading up to my cancerversary would be some sort of build up to a day I could honor and make dark jokes on but they are actually weirdly triggering and painful. I think I have a lot of healing work left to do in regards to forgiving myself for not finding the mass sooner and for not doing a self breast exam more regularly. Maybe if I had caught it sooner I wouldn’t be stage IV. Or maybe I wouldn’t have done chemo. Or get my boobs chopped off.

Or maybe… none of those scenarios exist. I don’t believe cancer was my “destiny” or “meant to be” because fuck that shit. Not every fucking adversity has to be a teaching moment or has good things that spring out of it like froyo out of a soft serve machine. Somethings things just fucking suck and they don’t make sense and it just hurts.

These memories fucking hurt. One year later and I am alive but I keep looking at the new oral chemo bottle full of dusty olive colored pills I have to start on Tuesday and the only question that pops into my mind is, “I am alive but at what cost?” I want to be alive. I am so eternally grateful that I am still here but how I got here meant sacrificing everything about myself. And some parts of my sacrificed self are for forever. I will be on hormone blockers and oral chemo basically indefinitely. I am at the mercy of good insurance, medical advances, and my BRCA1 mutation. Hope is a prerequisite for my survival.

I am so nervous to start oral chemo on Tuesday. I’ve been in contact with the pharmacy that will be sending me my medication. I am SO FUCKING LUCKY that my insurance is covering 100% of my expenses for this medication (yes… this is incredible and I guess very uncommon for this particular drug.) I do not even have a copay for it which makes me laugh because I have a 30 cent copay for my anxiety medication. The only downside is that the pharmacy will have to call me every 15 days to make me answer questions because insurance only approved 15 day cycles for the drug. The pharmacy said that eventually insurance will most likely move it to every 30 days, which honestly I don’t care. Call me every day if you want. Not paying $200 out of pocket for a drug to keep cancer from growing is a fucking blessing.

But what is NOT a fucking blessing are the side effects that oral chemo comes with and how many I have to take a day. I will be taking two pills twice a day called Lynparza. According to the website, “As gBRCAm tumor cells proliferate, they accumulate DNA damage. Tumor cells survive by repairing their damaged DNA via the PARP enzyme, among other cellular processes. Disrupting the DNA-repair process with a PARPi may help drive tumor-cell death.” Okay, so I know this is a lot so let me break it down since it has been a minute since I have done a science 101 lesson for you all.

BRCA1 and BRCA2 are genes that produce proteins that help repair damaged DNA. Sometimes these genes are called tumor suppressor genes. Everyone has BRCA1 and BRCA1 genes in their bodies. One copy is inherited from each parent. When you have a harmful variant (or mutation), cancer can develop and is markedly increased. According to Cancer.gov, “About 13% of women in the general population will develop breast cancer sometime during their lives. By contrast, 55%–72% of women who inherit a harmful BRCA1 variant and 45%–69% of women who inherit a harmful BRCA2 variant will develop breast cancer by 70–80 years of age. The risk for any one woman depends on a number of factors, some of which have not been fully characterized.”

When I was diagnosed, I was immediately tested for a mutation because of my family’s history with cancer. I tested positive for a BRCA1 mutation and this mutation comes from the paternal side of my family. Several of us are BRCA1 positive (our specific mutation is c.1953_1956del.) I am the youngest in my family to test positive.

Basically this drug is going to induce cell death. What is funny is that I have known I would be taking this drug since three days after I was diagnosed. I think my providers definitely downplayed it and made it seem like taking it was no big deal, but it kind of is. IT IS FUCKING ORAL CHEMO. On the Lynparza website it says, “Lynparza may also affect healthy cells and tissues in the body. The exact mechanism of action of Lynparza remains a subject of research.” So like it helps but we aren’t exactly sure why it helps but it also will attack more than just cells fucking up. Which brings me back to side effects!

I meet with a nurse tomorrow to sign a consent form and I know my oncologist and I will have an awkward conversation about this drug. She will basically tell me, “If you are sick, let me know how sick and if you aren’t that sick keep going.” The pharmacist who called me to approve the medication said I basically will be really nauseous for a couple of months, I will feel really tired, might throw up a bit, and definitely will have a low immune system. Cool cool cool. The side effects on the website based on a recent study listed the following percentage of patients that experienced the following side effects: Nausea (58%), anemia (40%), fatigue (including asthenia) (37%), vomiting (30%), neutropenia (27%), respiratory tract infection (27%), leukopenia (25%), diarrhea (21%), and headache (20%).

I didn’t read too deep into it so I am not sure for how long. I was told that it would be a few months and that my body would eventually level out. BUT WHAT IF I DON’T? I will ask more questions tomorrow. Will I always be immunocompromised due to this drug? How long does she want me on it? Forever? Do I ever get to not take drugs??? These are not even fun drugs!

Big sigh.

In the meantime, I feel like I am in a 10 day mourning period. I thought it would be less triggering, but I am triggered. I hate cancer. It just never seems to end. My next milestone will come on February 15, the day I had my ultrasound and surprise first mammogram. February 18 I will celebrate (weird word choice but I am going to leave it) my first encounter with needles I didn’t ask for or appreciate in the form of a biopsy. And of course February 21 is the day that will live in infamy: Cancerversary. But one day at a time, am I right?

I know I have been really negative, but I have also felt so loved. Yesterday I went to a friend’s house for Galentines breakfast and she made little pink ribbon pins for us all to wear in honor of Discovery Day. I cried. I was so touched that it was acknowledged as a painful day for me and a day that has deeply impacted not only just me but those closest to me. Sometimes I forget that I am not alone in this experience. There are many around me (including you, dear reader) who have chosen to ride with me on this never ending journey in solidarity. You have expressed at times feeling my pain or feeling touched by what I have shared. I know I do not say it enough but you are part of the the prerequisite for survival, too.

And in a fun surprise, an old coworker came by my house today and dropped off the most lovely gift basket of goodies in acknowledgement of how hard this month is for me. In my darkest and deepest holes of pain, you all seem to throw me ropes to climb. I don’t know how I got so lucky to be loved by so many of you.

So let’s end this on a bright note. I ate a shit ton of chicken wings today during the Superbowl and now it is time for me to prepare for slumber and a long day tomorrow.

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

“Survive, we’ll meet in the night
We won’t die
And I know that it’s hard to fight
It’s do or die
It’s do or die
It’s do or die”

– Do Or Die (feat. Lara), Blasterjaxx

Fast facts (if you don’t have time to read the full post): I know it has been a hot minute since I have written a post. There hasn’t been much to report on other than I am just existing in the world and trying to figure myself out. I see the oncologist on February 13 for a check in, labs, and of course my favorite injection. At that appointment, we will be going over the final maintenance drug being added to my daily drug intake: the PARP inhibitor. I think she will also order scans. I really hope she does. I want to see what is happening inside of my wack body. It has been a minute.

I celebrate several weird milestones this month. February 11 is “Discovery Day,” the day I found my breast tumor at work. February 15 was the day I had my ultrasound and first mammogram. February 18 I had a biopsy. February 21 I received my official cancer diagnosis. Big month. Big oof.

Also, today is World Cancer Day!

TO THE LONG VERSION!

The first time I did inner child work in therapy shockingly was last summer. I have been in therapy on and off for the last ten years, with more regular visits the last three years spurred by the pandemic and my diagnosis. One of the exercises we conducted was finding where my inner child lived, where I saw her. She was in an empty room with four gray walls. The light was low. There was a chair that reminded me of a wood rocking chair but it didn’t move. I saw her through the walls as if I had x-ray vision. I couldn’t go in, but she knew I was there and I knew she knew.

I had a moment of reflection the other day and tapped into that part of me once more. It was less of my inner child and more of a version of myself that was much older in a field of knee high bright green stemmed plants with tiny yellow flowers. The wind was breezy and the sun was insanely bright, almost making the yellow flowers reflect light. That version of me is standing there in a pale blue dress with shoulder length brown hair. My arms are wrapped around myself like you would if you were hugging yourself. My eyes are wet. It feels like I am frozen in time, a VHS glitching. I do the same movements over and over. It is a version of me that used to exist. I am not sure if it is a projection or a ghost or something else. I knew I couldn’t stay there long but it is a vision that haunts me and replays over and over in my brain.

If you have never done inner child work, this description may feel silly or really strange. It is a powerful exercise that can be incredibly impactful when guided by a therapist and by posing really simple questions like how you are feeling when you see them or giving yourself a moment to see what they want you to know. I’ve been trying to have more moments for myself to process complex feelings in my daily routine because I have this worry that I use my daily routine as a way to ignore things. If I am too busy then I don’t have time to think about how I really feel, ironic given I am always the first to focus on how others feel. It caught me off guard that my moment of reflection and introspection led me there. I haven’t really experienced that outside of therapy but leaned into it.

So, what does it all mean? I don’t have a full answer yet, but I am on to something.

Being NED or in remission or whatever you want to call it is a complex experience especially while on maintenance drugs with a stage IV diagnosis. It challenges the stereotype I had in my mind of what stage IV is: an immediate death sentence. I currently have no proposed expiration date by my doctor. I am expected to live and still can be marked as curative. Largely this can be attributed to the tiny lesions in my spine that were caught early and treated aggressively and the maintenance drugs I take every day. This also can be attributed to advances in medical technology and my type of cancer.

So why is this so fucking hard? I’m alive. I am starting to live again. Ultimately the answer is wrapped up in the ever evolving journey of survivorship. Survivorship is learning to let go of who you were so you can learn more about who you are now and who you need to be. And that is hard. You didn’t ask to change. You maybe didn’t want to change. You had to change in order to survive. That comes with mounds of grief and facing your fears head all while coming to terms with the fact that you are not in control. You can do it all right and it still may not be enough. That is fucking scary.

And it is scary. Survivorship is free falling in a nightmare only to wake up in a pool of sweat. It is every ache and pain inducing paranoia of rogue cells. It is the painful stretch of scar tissue in your arm as you reach for the mug in your cabinet and it is the never ending pill bottles on your dinner table. It is purple text reminders of your upcoming appointments and dark humor jokes about dying by your next birthday. It is every tear that races the water down your cheeks in the shower and the aches in your joints when you do dishes.

But survivorship is also lemon raspberry cake and dinner with your friends. It is laughing more when you watch your favorite TV show for the tenth time and it’s letting the rain hit your hair instead of trying to run for cover. It is feeling your heart race when you exercise and feeling the soil in between your fingers when you re-pot your plants. It is a five second hug and saying how you feel all the time. It is touching your new hair on your head multiple times a day to make sure it is still there and it is making plans for tomorrow.

That last one… making plans for tomorrow. I sat here for a few minutes and cried over that. Because even without cancer, tomorrow is not a promise. And yet, we make plans anyway.

So I now make plans in survivorship in ways I couldn’t make plans when I was in treatment. I don’t know where this is going but I am hopeful I get to see where I am headed.

I have carried feelings of anger towards my vessel for almost a year. I have been mad that my genes have mutations that harm me. I have been mad that I didn’t “love” myself enough to do breast exams more frequently. I have been mad I didn’t ask enough questions about the history of cancer in my family. I have been mad that my body did not respond to chemotherapy with a full response. I’ve hated the cells and scars on my body that have only done what they were asked to do: to heal.

I am beginning to learn exercises in forgiveness for the things I can and the things I cannot control in survivorship. They are complex motions of healing and ones that nobody could teach me or show me where to find them. Nobody could send me on this journey. It was one I had to seek out on my own. It is not linear and doesn’t have a timeline. There is a lot of work to be done but I think I am on the right path.

All of that being said, this seemed to be a fitting post to share on World Cancer Day! I had no idea today was that day until I saw it on my Instagram feed this afternoon. It is also the two year cancerversary for my friend finishing breast cancer treatment. Cheers to that! One of the cancer accounts I follow shared the following sentiment for World Cancer Day that I thought was worth sharing:

“As everyone talks about raising awareness and money for World Cancer Day, let’s talk about what cancer really means to us patients. It’s difficult, disruptive, a trigger, and it totally turns our worlds upside down but one thing that the world has brought to us because of cancer is community. It is a community that fosters support, validation and healing. To me, that’s what World Cancer Day is all about. I’m not here to ask you what you have done since you were diagnosed with cancer. I’m here to tell you that I’m glad you are still here since you were diagnosed with cancer.”

The Cancer Patient via Instagram

I’m glad you’re still here. I’m glad I am still here.

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

“The sun goes down, the stars come out
And all that counts is here and now
My universe will never be the same
I’m glad you came (Came, came, came)”

– Glad You Came, The Wanted

Fast facts (if you don’t have time to read the full post): All last week I was sick as fuck. COVID evolved into some sort of upper respiratory bacterial infection so I was out for the count. I met with my oncologist yesterday and got some long awaited answers, both good and bad.

TO THE LONG VERSION!

It has been 330 days since I was diagnosed on February 21, 2022 with breast cancer. Time flies when you are getting fucked over by the universe! But now that a lot of the hard parts are over, I am over here like the John Travolta meme wondering what the fuck just happened???

Diagnosis. Weird port surgery. Chemo. Stomach injections. Red devil. Lots of naps. Constipation. More chemo. Boobs chopped off. Numb chest. Radiation. More drugs.

White noise.

I saw my oncologist yesterday and I was not there to fuck around. The good news: I lost 7 pounds. This is significant for me because I just want to feel more comfy in my body again. I got a lil fluffy during chemo which I mean no biggie but at the same time I like it when my pants aren’t suffocating my belly button. When I weighed and saw the number, I pulled out my best Kip “YES” impression. The nurse awkwardly looked at me and said, “That is literally the first time I have ever seen anyone excited about their weight.” I am special, I guess.

The other good news is that my oncologist declared me NO EVIDENCE OF DISEASE! I am NED! NED NED NED NED NED! Scream it from the rooftops that I have entered the remission stage of cancer and it feels SO good. But this is cancer we are talking about and cancer never comes with just good news.

The bad news is I am officially categorized as stage IV. So so so devastating and stupid and fucking lame. I just wanted her to say it because she had not to my face at that point. She acted like she had told me before and was like, “Well you can’t go down in stages.” I know. I am not a cancer muggle, lady. With that news she proceeded to tell me that she would recommend I never have children at this point since I would be putting myself at risk for recurrence and it probably would be really bad. Since I am hormone positive (80% of my cells are estrogen receptor positive) a pregnancy would introduce hormones and feed my cells what they love: estrogen. That news was depressing. I am in a “Babies After Breast Cancer” Facebook group and there are plenty of folks who are hormone positive having kids, but I don’t think I have read anyone who is stage IV pulling this off. But I like to believe in miracles and that my body is capable of amazing things. After all, I survived chemo and radiation. I can do hard things.

Ultimately, I have decided that I want to seek out another opinion on my case since I don’t like her approach on the topic. I think I want more information. In the meantime, I will continue with the maintenance drugs. I started my oral hormone blocker pill on Sunday. I have another drug we will be introducing soon called a PARP inhibitor. She wanted to wait a bit before starting me on it. It sounds like I will be on it for a year I think? But she said she has to talk with my insurance and make sure they approve it because it is extremely expensive and see how much my out of pocket will be. We may have to approach the Tri-Cities Cancer Center Foundation about helping me pay for the drug since she said for some patients it could cost up to $200 out of pocket per refill. I am not sure how many I have to take, frequency, or how many come in a prescription but I will learn more next month on February 13. That is my next appointment and favorite injection (sarcasm).

It is nice the dust is settling though. I am tired of fighting. I am entering what I view as the hardest phase of cancer treatment: survivorship. How do I rebuild my life? What do I want to prioritize? What matters most to me? How do I heal from this devastating and life changing event? Is it possible to heal and move forward? I guess time will tell.

I thought my relationship with cancer would have some sort of end and unfortunately it never will. Someday cancer will kill me. I mean, something else could kill me like a car or something but realistically cancer will first. I hope it is decades from now but it very well could be a decade from now. Or even five years from now. Maybe a cure for cancer will magically appear before then. That would be nice. I’d pay big money to be cured of this stupidity.

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

“Smile
Show me where it hurts
‘Cause you ain’t got nothing to worry about

I said smile
No matter what you heard
There’s a paler shade of grey, my friend”

– Smile, Galantis

Fast facts (if you don’t have time to read the full post): It is day five of COVID. I thought I was getting better but I lost my smell and taste this morning. Where did it go? I don’t know. This week I have no appointments. I get a small break. Monday, January 16 I will see my oncologist and get my Zoladex injection. I don’t see the radiologist for a follow up until March 22.

TO THE SHORT VERSION!

Cancer patients celebrate any and every milestone. You woke up today? Celebrate! You went to chemo and didn’t puke? Blessings! You pooped?! Gold star! Everything becomes worth noting because you are still fucking here and still going through the shit.

And then you get milestones like this that almost feel too surreal: you finish active treatment. No more chemo or radiation? Are you sure I did it all? Are you sure I consumed enough poison? Because I don’t want to do this again. Please don’t make me do it again.

I am done with active treatment. The end has finally come 11 months after a dark diagnosis. My chest has been fully cooked and now my spine too. And now I wait. I wait to get more scans. I will see my oncologist on January 16 to go over things. I will do my maintenance drugs for the next 3-5 years. I will get breast reconstruction within the next year. And I hope I get to see those sweet words on my CT that say “no evidence of disease.” Or something like that.

As a friend typed on my Facebook status, “You did it! You didn’t want to, you shouldn’t have had to, but you did the damn thing.”

Yeah, I did that shit. I trekked hundreds of days through my personal hell! And I have hundreds more to go to get the fuck out of here!

I need a flashlight. I’m lost.

Also, they ~almost~ did not let me ring the bell again. I left treatment and the radiation tech was like, “You’re sick you probably shouldn’t touch it.” I mean I get it, but also like I can wash my hands five times and we can disinfect the bell after. It’s not like I am making out with it. I just pull a string really hard. With my hand. Not my mouth.

I was placed in a small room where patients wait at when they come in on the ambulance to wait for my non-assigned radiologist to basically look at me and tell me to go. The nurse came in to do my vitals and she was like, “Did you ring the bell already?” I told her someone said I couldn’t and she was like, “I have gloves. You can wear a glove.” So I wore a glove. I was the last patient in the building and my audience was just me, the nurse taking my photo, and two of the techs. They clapped and I heard the front desk folks cheering for me. It felt very anticlimactic but I got my ring.

Then the radiologist came in and handed me the aftercare paper and was like, “Well, I guess there is no point giving that to you since it was just three treatments so you won’t have any side effects. But call if you do I guess.”

Awkward silence.

“Oh okay. Um, thanks,” I mumbled through my N95. “Do you want to see my chest to make sure it is looking okay?” “Sure,” she said weirdly. I lifted up my sweater, she glanced at it and said, “Looks fine to me. You heal really nicely!” And then I scurried out of the room like a subway rat looking for day old pizza. Call me mad rat. It was literally the most pointless appointment of my life. It literally could have been an email. And my insurance is going to get charged like a $1000 for our interaction. Watch. I will show you all it when I get the charge.

I came out to my car and my best friend Sue had placed some goodies on it. We social distance cheered and danced. I then met my sister after and she treated me to some to-go sushi. I was grateful that two people decided to show up for me but it also just made me feel sad.

COVID literally ruins everything I do. The celebration of being done with active treatment has been halted because of this stupid virus. I should have been out partying, getting randos to buy my cancer ass some drinks! I wanted to yell at the top of my lungs that I consumed chemo like a champ (since my tumors only had partial responses) and I made radiation my bitch (aka I literally laid there and did nothing!) Instead, I stayed home all weekend with my cats and watched raindrops race each other down my window. And my friend Cindy brought me a strawberry milkshake yesterday. SHOUT OUT TO CINDY. That was a nice highlight. Glad I got to enjoy it before I lost my fucking taste and smell.

I really think maybe someone cursed me. COVID really loves me. COVID, why are you so obsessed with me?! Today I lost my smell and taste. This shit is getting really old. I am literally sitting here as I type with menthol on my nose and I cannot smell anything. If it doesn’t return, I will lose it. LOSE IT. COVID has been the bane of my fucking existence since December 2020. I have a mild headache and I am still testing positive for COVID. Cool cool cool cool cool.

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

“Baby, this is what you came for
Lightning strikes every time she moves
And everybody’s watchin’ her
But she’s lookin’ at you, ooh, ooh”

– This Is What You Came For, Calvin Harris, Rihanna