All the Words I Never Meant to Say

A couple of weeks ago my dad and I were trying to make plans, and, when he proposed a Tuesday night, I said “I can’t do Tuesdays. I’m post-chemo Tuesdays”. He paused and drew a long sigh before saying “I really wish you wouldn’t call it that”. Stunning me speechless is a rare occurrence. I wondered “Would he prefer we called it Metho?” Metho is an abbreviation (for Methotrexate) we often use in our family which sounds a lot, if comically, like meth. Would he rather people think I had a meth habit?

I started thinking about myself and other chronic patients that take low doses of chemo – how would Cancer patient feels about us? Are we appropriating their chemo experience?

I don’t think we are. We are chemo patients in our own right. This morning I missed a breakfast meeting as crippling nausea and vomiting from Monday’s dose laid me out for the second day in a row. Last Friday I was in the shower watching clumps of hair collect in the drain. For the last week, my face and mouth have been covered in sores. I’m not appropriating anyone’s chemo experience: I have one all my own.

But this post isn’t about chemo. It’s about the brain-to-mouth filter than many chronic patients employ every day when talking to their friends and loved ones.

The answer to the most basic question “how are you feeling” feels like a loaded weapon in my mouth. Something to aim and discharge at the people I love most.

The truth is, I don’t know how to respond to this question anymore. This isn’t to say that I don’t have good days, I do. A lot of them. We recently took a vacation to Austin, TX that was beautiful and wonderful and full. Full of music and good food. Full of beer and tequila. Full of laughter and the connectedness that comes from sharing experiences with your best friend on earth. But for the entirety of our trip, I felt crushing chest pain. Chest pain that made me feel out of breath at the end of a long sentence. Out of breath – me, the #RheumAthlete.

At the airport bar waiting for our flight home we talked about what this chest pain meant: was it because we recently decreased my chemo dose? Or because I was almost a month out from my last infusion? Were my new blood pressure meds working?

This a good day in our house: devastating chest pain and the near constant anxiety surrounding its exact cause.

So when people ask me how I feel I usually say “Good. Today I feel good. It’s been up and down lately, but I’m hanging in there”. It’s not a lie, but it’s not 100% truth either. Because at the end of the day, what I sometimes (more than I’d like to admit) feel is this:

I am living a long (sometimes excruciating) and drawn out death sentence.

Before tonight I’ve said those words to exactly three people: Emmy, Vin, and Jules.

Thank you, wine.

Allow me to be clear: I’m not dying (today), nor do I think or feel as though I am. But there are certain unavoidable truths about this disease that I wrestle with every day. And, while I filter them from casual conversation, it doesn’t mean I ever really stop thinking about them.

If you think I’m being melodramatic, try running the following Google search “rheumatoid arthritis mortality and life expectancy”.

Certain results stand out more than others –

“People with RA are at increased risk of heart disease, particularly ischemic heart disease. RA patients are more likely to be hospitalized due to myocardial infarction, angina, or congestive heart failure.”

I’m a veteran of acute congestive heart failure, and years of Pericarditis have caused the lining of my heart to harden and become thickened with scar tissue.

But this is the one that scares me the most –

“People with RA have increased risk for some cancers. Lymphoma, a cancer of the lymphatic system and white blood cells, is more likely to occur in people with moderate to severe RA. This is especially true of Hodgkin’s lymphoma. According to the Johns Hopkins Arthritis Center, studies show that people with RA are 63 percent more likely to be diagnosed with lung cancer.”

Do you want to know another fun fact? Every single biologic drug currently on the market also brings with it an increased risk of Lymphoma. That’s right. The Orencia that I fought so hard to take essentially doubles down on my long-term risk of developing Lymphoma.

These are the decisions we as chronic patients make every single day. The benefit of quality of life in the present comes with untold consequences in the future.

What propels me forward is all of those good days that the Metho and the Orencia buy me in the short term. Dragging Vin up Mount Bonnell. Crushing Spartan Races with my friend family. Running with Penny. Pretending to keep up with Emma and Cadence. Some of these decisions will cost me more than others in the future, but, when the odds are decidedly stacked against you who really cares? There is only one choice: to live openly and unapologetically and fearlessly.

And part of being fearless is saying all of the words I never meant to say.

2 Replies to “All the Words I Never Meant to Say”

  1. Hi! I do not have RA but i do have systemic lupus so i understand what you mean when you talk about facing a “long delayed death sentence”. Life can be so challenging and frustrating. I am very sorry that you have RA but am glad to know that others out there understand my journey. Hugs

  2. It’s such a balancing act, isn’t it? I strive to be so positive, but there are times when it’s hard not to stop an acknowledge some of the scarier aspects of these systemic diseases. Sometimes it just helps to get all of those feelings out in the open – especially so that our “healthy” peers can really have a glimpse into what we’re going through or even just what weighs on us day to day. A week later I’m feeling a lot better about things, but I’m glad that I can share and that the posted resonated with others. Thank you so much for reading for taking the time to comment XO

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