invisible illness

After I published my first blog about my diagnosis, I had a goal to write every day in the hospital. I thought it would be a therapeutic outlet and an easy way to document my journey with cancer. Somehow, I was continuously met with writer's block…even though I was writing about my own life and experiences.

The next thing I knew, I had made it through 37 days in the hospital and was headed home. And I hadn't written another word since the first blog.

"Now that I'm back home, I'll write every day," I thought.

Wrong again. 63 more days have passed since I left room 905. And somewhere in those 63 days, I eventually convinced myself that I just couldn't write about what's really going on in my mind and body. Every time I sat down and put my fingers on the keyboard, I couldn't articulate how I genuinely felt. I've been terrified to be vulnerable and show all the people who think I'm so strong how weak I sometimes feel.

I finally figured out where my writer's block was coming from when I heard this line in a movie recently:

"Write like no one's going to read it."

That line hit me like a train. I quickly realized that every time I've sat down to write, I've tried to depict my cancer journey with a toxic positivity I didn't always feel. I was trying to paint what I've been through in the most uplifting light possible, only to be seen through the finest rose-colored glasses. I finally decided that if I sat down and wrote again, I'd write as if no one was going to read it.

Because the truth is, what I'm going through isn't sunshine and butterflies. I realized I was unintentionally posting all the good and none of the bad. I showed myself dancing on my IV pole at chemo, pictures from the days in the hospital where I had enough energy to put makeup on, friends visiting, getting my new puppy, and even the fact that I'm now in remission.

But unless you're a close friend or family member, you probably don't realize that I’m not even halfway through my treatments. For 4 weeks at a time, I go to the hospital 5 days a week for 3-4 hours to do chemotherapy infusions. To shed some light on what's going into my body, the chemo they give me is called arsenic trioxide. Quite literally, a heavy metal poison. Once I complete 4 weeks of that, I get a 4-week break. I repeat that until I've made it through 4 total rounds. 80 total days of receiving IV chemo over 7 months. Not including the days that I spent living in the hospital. The chemo infusions will wrap up towards the end of April 2023.

Additionally, every 2 weeks, I take 8 chemo pills a day for 14 days. Followed by a 2-week break. This is also repeated until the end of April 2023. And surprisingly, the tiny red pills come with even worse side effects than the arsenic poison they put directly into my bloodstream.

So, I haven't been very vocal online about how hard it's been. It doesn't feel natural to be vulnerable on social media. And it certainly doesn't feel natural to take a break from posting all of the beautiful parts of your life, like your friends, family, boyfriend, trips, and dog, to write about a big ugly monster called leukemia. But it’s important to me that I try. Because maybe someone is reading this right now that’s going through cancer and feels alone. Or maybe someone is reading this that is afraid to be vulnerable and honest about when they’re struggling. I believe if we all opened up to each other a little bit more, no matter what we’re going through, we wouldn’t feel so alone.

Invisible Illness by Jordan Quinten

You won't remember your body giving permission

because cancer doesn't ask for consent.

It doesn't care who you are,

it can still reside in your body and pitch a tent.

But even when it starts to die

so that you don't have to,

The brain still remembers

all of the hell that it put you through. 

And you'll wonder each day when "normal" will return,

but the old you isn't coming back. That's what you'll slowly learn.

Cancer is like a tattoo that no one can see,

even if you’re in remission, you can still live with PTSD.

And if you're in remission, you're done with chemo, right?

Unfortunately, the answer to that is: not quite. 

Little red pills and IV chemo each week,

results in exhaustion, headaches, nausea, and swelling in your cheeks.

Sometimes you'll wish you could go back to sleep forever when you first wake up,

but you'll still get out of bed, drive to chemo, and put on your makeup.

With an invisible illness, here's what you'll find,

no one knows how hard it is or what's going on in your mind.

You know you look normal and haven't lost all your hair,

but you wonder if they'd understand more if your head was bare.

Will you ever feel "normal"? It's hard to predict.

All you can hope is that good health and happiness are in your script.

But every time you feel okay and finally find hope,

you see the devil on your shoulder with a sign that says "nope."

The most brutal time in your 28 years,

you now spend more time with nurses at chemo than with friends drinking beers.

With invisible illness, no one would ever know

how sometimes merely existing feels like putting on a show.

Smiling or laughing or being hard at work,

no one can see the exhaustion or depression that inevitably lurks.

You'll miss birthdays and weddings and important events,

and you'll desperately hope the invitations continue being sent.

You'll feel guilty almost daily because you know things could be worse,

but that doesn't change how close you came to riding in a hearse.

And how everything you're going through sometimes makes you feel like you're cursed. 

You won't always feel inspiring or brave or strong.

You did in the beginning, but treatment has felt far too long.

You yearn for the days when this is all in the past,

when your health is at its best, and you can take off your mask.

"Everything happens for a reason," doesn't it?

Constant attempts to remind yourself even when you feel like shit.

You know that someday you'll turn your pain into purpose.

In the meantime, you'll pray every day that the cancer doesn't resurface.

Cancer survivor is what you will eventually be.

Just hang on to your hope for 6 more months and you'll see.

Despite how challenging this experience is, I know deep down that the pain is a part of my story. It's a story that's still being written, and I'm the main character.

I haven't read the ending yet, but I have a good feeling that despite what she’s been through, the protagonist will come out on top.