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.
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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”
madisonhatescancer 