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

Fast facts (if you don’t have time to read the full post): Although I am infected with COVID for the third time, I found out yesterday that I could finish radiation treatment on my spine because it is considered “special.” So yesterday I hauled my ass to radiation at 4 pm. Tomorrow is my last radiation treatment. At 4:30 pm, I will be waiting patiently to see my radiologist for one of the last times. I will be DONE. Dunzo. The end. El fin. Complete. However, my Zoladex and oncology appointments all got moved to January 16. Oh well. Those don’t go away so I don’t really care.

Also was nobody going to tell me that I was putting the day count wrong!? Yesterday’s post was in the 100s again. What the fuck.

TO THE LONG VERSION!

On February 22, 2022 I wrote my first blog post titled, “Fuck” one day after I found out I had breast cancer. (You can click on that word if you care to re-read with me.) Honestly, are we surprised that was the title? I’m not. Tears are streaming down my face as I reread my words of uncertainty, of pain, and a tiny pinch of determination. The February 2022 version of Madison had no idea what was coming for her. How could she know? She didn’t. And yet, she found out and is here today, January 5, 2023 to tell the tale.

“Today is going to be a hard day. I’ve got a learning curve ahead of me and a needle fear I have to overcome so fast. So many fucking needles. Fuck.”

Ah, young Madison, so many needles. And so many left to experience! Thank goodness you have a port! I like how that was one of my main concerns, not like how bad chemo would make me feel or the dark and evil nights of constipation that led me to giving myself enemas. It was not the pain of losing my breasts or the awfulness of the steroids. It was not the wackest sunburn I have ever received. No, it was needles. It has always been needles. I am still scared of needles and probably more traumatized by them now. Needles = cancer care.

Gosh I am laughing so hard.

Granted, I did not know how dark hell could get for me so all I could think about was the needle haystack from the “Saw” movies and how that felt like what cancer would be for me. Luckily it was less haystack-y and more feeling shitty and wondering when it would all end. And tomorrow it ends!

At 4 pm, I will be escorted through a backdoor (because ya girl is COVID positive) into the radiation side of the cancer center to get my last spine radiation with my N95 mask in hand. I will get radiated by invisible poison, see the radiologist, and peace the fuck out. I will quietly celebrate alone in the parking lot. My sister has offered to bring me a sushi roll and socially distance celebrate with me as I mark off active treatment on my to-do list in fucking destroying cancer. All that is left is maintenance drugs (hormone blockers and PARP inhibitor for at least three years, maybe longer), scans, and follow ups. And then I will be forced back into the world and be told to act normal.

What is “normal” post-cancer treatment? I don’t even fucking know. I know I have always been a little weird and never would call myself normal but it feels worse now. My life is currently in shambles. I don’t even know where 85% of the pieces are or where to even start. But I am alive. I am here. I won’t dip into that toxic positivity, but fuck I never thought I’d make it and I am grateful that I did.

“I am choosing to keep my story as public as possible….. I hope to learn a lot to help others down the road with this experience and use that knowledge to advocate for better healthcare for all folks.”

The blog isn’t over, but I know it will be winding down in many ways. I hope that I have shared authentically and that you have been open to hearing my experience. I hope that it better equips you if a loved one falls prey to cancer. And I hope you are all doing your monthly checks on your boobies. Please, if you have learned anything, CHECK YOUR BOOBS.

Of course I am cooking up a glossary of terms page and I still have one major blog post I need to cover that I have avoided the WHOLE ENTIRE YEAR: the subject of fertility. It was the one thing I did not want to address and I think I am getting to a point where it is time to share with you all. I don’t how much there is to share but perhaps there are some thoughts there that can better help support other AYAs (and myself) going through treatment.

I want to end this blog the same way I ended my first post. Because I chose to fight and I will keep fighting. Tomorrow is the start of something new.

“I came here to kick ass and chew bubble gum, but I am all out of bubble gum.“

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

“It’s a new dawn
It’s a new day
It’s a new life
For me
And I’m feeling good
I’m feeling good”

– Feeling Good – Bassnectar Remix, Nina Simone, Bassnectar

Fast facts (if you don’t have time to read the full post): I had my first radiation appointment today. It went pretty okay. It was boring as fuck. But now… my whole week is fucked up. Ya girl has the ‘vid again.

TO THE SHORT VERSION!

Sometimes things get so bad in life that you just have to lololol it out. Like me getting COVID for the third time, days short of finishing radiation treatment for what I hope is forever. If you are having déjà vu, that is valid because I caught COVID three days before my last chemo as well. Am I meant to just not finish treatment on time or something? What is the universe trying to do for me here?

So no more radiation this week. No more Zoladex injection or oncologist visit. My body chose violence. Me and my sick ass will stay home and work most likely, get in a couple hours of animal crossing, and sit in existential dread. And probably nap.

I did have my first radiation treatment today though and it was boring as hell. I will say the ceiling art is way more interesting in the room I am in for my spine treatments. It is a bit more mature? Unfortunately, a red laser is like blinding me 80% of the time so I have to have my eyes closed. I think they use it for alignment purposes but I didn’t ask. Treatment lasted about 30 minutes. The scans and treatment for the T9 vertebra was quick but the L1 was so long. I was scanned twice each time before the treatment was given but the second treatment just keep going on and on. The machine was like stuttering, which I am guessing was intentional? It was weird. It still made a loud humming noise like my chest ones so I knew when I was being scanned versus being poisoned. I wish we could play an audiobook or something because it was so uncomfortable and I ran out of things to talk to myself about in my brain. Radiation is a great time to sit in a cess pool of anxiety.

I went to work after and I started to feel oddly fatigued and weird. I literally thought maybe it was the radiation. Can radiation symptoms work that fast? I don’t know. I had a little tickle in my throat and chalked it up to radiation literally passing through the front side of my body to reach my spine. But then a friend told me tonight that she tested positive, so I was like what the fuck I better test to be sure.

Two little lines lit up way too quickly. You know how you are told to wait 15 minutes? I only had to wait two before that stick was mocking me.

FUCK ME.

Stay tuned to learn more about how the universe is conspiring against me.

No song today. I am not feeling great. Sorry.

Fast facts (if you don’t have time to read the full post): Tomorrow is day one of three spine radiation treatments. I will have radiation tomorrow, Wednesday, and Friday. Friday I will meet up with my non-assigned radiologist. Sandwiched between those treatments I will meet with my oncologist on Thursday along with labs and my favorite Zoladex stomach injection. It is a packed week but it is also my final week of active treatment!!!

TO THE SHORT VERSION!

I generally enjoy consuming non-fiction reading materials but lately I have been heavily into romance. Modern romance books are nothing like what I thought romance books to be. The ones I have been reading tend to have a lot of substance, interesting characters, and fun plots. They are easy reads and require less attention since I am not trying to retain information. A lot of my non-fiction titles revolve around medical topics and history, so I try my best to be present. Romance to me is like drinking a slushie; non-fiction is wine tasting. I take wine tasting very seriously.

What I did not expect is that many of my books lately, regardless of genre, have had characters and people experiencing cancer or talking about cancer. Is the universe trying to send me a sign or is this just a weird coincidence? I am currently reading my fourth romance in a row and a few sentences caught my attention:

Mom’s first diagnosis taught me that love was an escape rope. But it was her second diagnosis that taught me love could be a life vest when you were drowning.

Emily Henry, “Beach Read“

Big oof. In light of my previous post, this sentence stopped me mid-read and it gave me a lot to ponder. The character who said that quote writes romance books with happy endings. I have had that stuck in my brain all day.

A cancer diagnosis is so incredibly complex for not only the person experiencing it, but also for loved ones. This is NOT an excuse (in reference to my previous post), but a moment for empathy and compassion. A lot of what you learn about how this impacts you and others cannot be fully understood or seen unfortunately until you are past that moment. The last 48 hours have been literally that: a culmination of everything I have experienced crashing into the centerfold and all the lessons exposing themselves like pages in a math book flying in the wind.

I recognize my previous post had some very heavy information in it. I am not choosing to ignore that (well I kind of am temporarily) because this week I really need to focus on finishing my last set of active treatment and that means putting my lil midlife crisis on the back burner to focus on me. I am on the path to NED (no evidence of disease) and I really hope that post-radiation involves scans and those scans being CLEAN. Then I can focus on bullshit and survivorship and figuring out how to live life after cancer.

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

“In my dark sunglasses
I can hide behind
I’m drowning
But you won’t see me cry
When bad things happen, it’ll be alright
As long as I know you won’t see me cry”

– You Won’t See Me Cry – Crackazat Remix, Moon Boots, Little Boots, Crackazat