“SYMPTOMSPLAINING”

“SYMPTOMSPLAINING” by Casey Slater

“Gaslighting” is a term used to describe being manipulated into feeling like you’re crazy, when you know the truth the whole time. Hypochondriacs are told they’re some version of “nuts” all the time. But so are cancer patients. Especially when symptoms appear unrelated at first sight.

After my own Hodgkin’s Lymphoma symptoms were dismissed one by one in 2016, I realized that the best advocate for your health… is you.

But advocacy is a full-time job. And when you’re fighting cancer, you already have a full-time job: surviving.

MISSED CONNECTIONS

In March, 2015, my spleen was killing me. I went to my knees from the pain. I told my Mom, who is a nurse, and I swore it wasn’t cramps or gas or excessive drinking.

It was a symptom of Hodgkin’s Lymphoma.

One doctor looked at a rash on my arm and said it was “probably poison ivy” since I’d been hiking in the Barton Creek Greenbelt. But I’d been hiking there for 13 years and I definitely know how to spot and avoid poison ivy.

It was a symptom of Hodgkin’s Lymphoma.

I was in yoga and started seeing black dots and lost my hearing.

It was a symptom of Hodgkin’s Lymphoma.

I had night sweats, which was explained to me as “well… people get hot.”

It was a symptom of Hodgkin’s Lymphoma.

I had lost over 15 lbs. without any physical explanation, but doctors told me it was “probably due to stress” or “being so active.”

It was a symptom of Hodgkin’s Lymphoma.

When I later told my Mom that I couldn’t breathe going up stairs, she knew something was up.

It was a symptom of Hodgkin’s Lymphoma.

When my gums started bleeding randomly, I knew something was up. For sure.

It was a symptom of Hodgkin’s Lymphoma.

When we started seeing doctors, getting my bloodwork done, my Mom, an oncology nurse, is the one who called out that my white blood cell count was too high for not showing an infection.

She said, “I think it’s cancer,” and she became my strongest advocate.

I felt a lump above my right clavicle on October 17, 2015. The ENT I went to was taking cell phone calls in the middle of my appointment. He thought I was “fine” and it was more likely “something with [my] thyroid.”

My mom got into a screaming match with him, and told him straight up to put down the phone and LOOK at the nodule she was clearly seeing.

It was a symptom of Hodgkin’s Lymphoma.

I don’t know how anyone goes through cancer without a Mom like mine.

A MATTER OF TRUST

Being an oncology nurse may have had something to do with her intuition that it was cancer, but the doctors I saw should have been able to see it, too.

She was also on high alert because my Dad also has cancer. But the real difference between my mother and those doctors was that she trusted me.

She knew me. I was a gymnast and yogi, and I’ve always known my body well. My Mom has seen me many times take care of myself after injuries or through illness.

My doctors, on the other hand, didn’t trust me or listen to me, and they missed my Hodgkin’s Lymphoma. Doctor after doctor missed the connections between my symptoms. They just “symptomsplained” them away.

“No, it can’t be cancer. You’re ‘too young,’ you’re ‘too healthy,’” they told me. “Hodgkin’s is an ‘old man’s disease.’”

I wasn’t correctly diagnosed until June 11, 2016, 9 months after I felt the lump above my clavicle. By then, my cancer had already progressed to Stage III. Actually, it was Stage III-B, which means “shows symptoms.” Yeah, no kidding.

When I was getting dismissed in Austin, it was my mother who called her personal contacts at UT Southwestern and said, “trust me- this is not normal.”

One reason trust played an important part in my diagnosis is that I don’t really have a family history. Besides my father’s bladder cancer, no one in my family that we know of has had cancer- certainly not lymphoma.

The Chemo Chair Test is one question: Have I done everything I could to take care of myself?

THE CHEMO CHAIR TEST
I did have to be brave, fighting with my life for both my physical and mental health.

Beyond being a strain, my mental [un]health may very well have led to my Hodgkin’s Lymphoma. When I look back at it, I am not surprised that I was diagnosed with cancer.

Not only was I stressed out from work, ending a toxic relationship, and moving, but I was also suffering from body dysmorphia. An unwelcome side effect of my former life as a gymnast. To stop myself from eating and gaining weight, I was popping Adderall like they were breath mints, suppressing my immune system, never getting sleep, and living in a perpetual state of anxiety.

On top of a hazy family history, I had been placing myself right in the line of fire.

While battling Hodgkin’s Lymphoma, I made myself a promise to change how I would live moving forward. I created something called the “Chemo Chair Test.” It’s one question, pass-fail:

If I were in that chemo chair again, would I feel proud of how I’d taken care of myself?

LIFE SUPPORT

When I had a breast cancer scare in 2017, my life passed the Chemo Chair Test. But I was still freaking out.

After they had borne the brunt of my cancer the first time around, it didn’t feel fair asking my family to take it all on again- and all my mental health issues that came with it.

Thanks to the Flatwater Foundation, I was able to get myself into therapy. Flatwater covers all costs for patients and their caregivers.

I needed therapy to get to the root of my issues, prioritize my boundaries and self-care, and handle my paralyzing paranoia of relapse.

All cancer patients and caregivers should have access to therapy. The ability to sustain your emotions and mental health during and after cancer is as vital as the chemotherapy, itself.

I had to fight tooth and nail to get a PET scan when I showed signs of potential relapse.

98,000 MINUTES

I needed Flatwater’s therapy badly in 2018, when I showed signs of a Hodgkin’s Lymphoma recurrence, and my insurance provider denied my PET scan.

My PET scan, out of pocket, was $9,000. I was denied, as a cancer patient, a scan to see if I was relapsing. I’d already undergone a biopsy, which showed my lymph node was atypical.

It took three weeks to fight my insurance provider. When it comes to fighting cancer, every minute counts.

Cancer doesn’t pause its growth to wait for insurance to act right.

I remember, after an interview with my insurance provider, I was heading into a meeting for work and a coworker looked at me and asked, “you alright?” I just started bawling my eyes out.

Not everyone has those “extra” weeks to wait. When I finally did get approval for the PET scan, it did show I was in malignant range.

I had my biopsy on June 11, and didn’t have surgery to extract the tumor until August 17.

For approximately 98,000 minutes, my body was attacking itself- every minute- while I waited, yet again, to be heard.

Everyone celebrates your last chemo treatment, but no one really knows what comes next.

NOT QUITE SAVED BY THE BELL

You hear a lot about the “chemo bell,” which you ring and celebrate when you’re done with chemotherapy, but no one ever talks about what happens next.

Fear of recurrence is like walking around with an Annoyingly Persistent Monkey on your shoulder, as you’re just doing normal things, paranoid that it’s cancer every time something in your body shifts.

If you relapse, not only is the treatment way more intense, but the isolation is lonely.

30 days of quarantine in the hospital after a stem cell transplant takes out your whole immune system, putting your body through a “rebirth.”

Once stripped of your immune system, there’s a very real fear that the bacteria on an apple could kill you before your cancer does.

And, if you survive stem cell transplant, a year of chemo follows. Welcome back, isolation, muscle atrophy, insomnia, neuropathy, fatigue, and depression.

You’re not “saved” just because you ring the chemo bell. Ok, you bought yourself time. But your journey of paranoia and the unknown has just begun.

WHO YOU GONNA CALL

Then there’s the reality of what your family and friends are actually prepared to handle. I was in a new relationship, and he was really supportive and all-in, really early on in dating me, but it turned out that he just couldn’t handle it, after all.

There were all kinds of people I expected to be there for me, and weren’t. Maybe they didn’t know what to say, or they weren’t prepared to confront the truth that cancer reflected about their own lives.

Other people, like my sister and brother, proved that they are there for me no matter what.

It felt so good just to have normal conversations with my siblings.

But I didn’t want to call them all the time, or just about cancer. Sometimes I just wanted normalcy with them. It felt so good to have a regular argument!

But then who was I going to call? Flatwater. I don’t know where I’d be without them. I was in a really, really dark place, and they connected me with the help I needed to find my voice, when I was missing it and needing it the most.

“SYMPTOMSPLAINING” by Casey Slater

NOW WHAT?

Fortunately, I have been fully cancer free for over a year now! And I still need therapy to cope with my new reality. I may not be able to have children, and the Annoyingly Persistent Monkey keeps yapping urgently from my shoulder that time is ticking to do more, be better, and to never waste one minute of my time in this life.

So here’s what else I’m doing now:
• While I’m 33, I’m leading 33 free yoga classes to support others.
• Connecting with other young women online who use the hashtag #HodgkinsLymphoma.
• Driving around the country living full-time in a camper van, because I just love the freedom it gives me to LIVE. On my terms.

Here’s what else you can do:
• Donate to Flatwater! They save cancer patients’ lives as powerfully as their oncologists.
• Listen. When a patient tells you about symptoms, look for any and all connections.
• And do me a favor- don’t try to relate or connect to a cancer patient by bringing up a story you know about someone else who had cancer… and died. Yes, that has to be said.

And:
• Hold yourself accountable to your own version of the “Chemo Chair Test.” You only get one life. It is short and it is precious. Make the most of it and take care of yourself.

XX
Casey

“SYMPTOMSPLAINING” by Casey Slater

Connect with Casey Slater on LinkedIn and make sure every cancer patient and caregiver has access to therapy by donating to the Flatwater Foundation here: https://www.flatwaterfoundation.org/.

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