Spinal cord ependymoma survivor confronts fear

When I was undergoing radiation therapy for my spinal tumor, I took my
12-year-old brother to the MD Anderson Proton
Therapy Center
. He wanted to see the machine and was fascinated
by the process.

On the drive home, he asked me, “Bubba, what’s the scariest thing
you’ve ever done?”

I had to be honest with him: I told him it was the surgery I’d just
gone through and proton therapy. It was really fear of the
unknown. With cancer, I wasn’t in control, and I didn’t know what was
going to happen.

My spinal cord ependymoma diagnosis

Let me rewind to where it all started: In October 2016, I flew to
New York City for work. When I landed, I had some lower back pain, but
I didn’t think anything of it. I went to my hotel, had dinner and went
to sleep. Around 4 a.m., I woke up in a cold sweat with excruciating
pain. At first, I thought I’d pinched a nerve and that it would go
away. After an hour, I was still in pain and went to the ER, where I
was diagnosed with a pulled back muscle.

Back home a few days later, I went to my primary care physician. An
MRI revealed a 4-centimeter mass inside my spinal cord.

Everything around me stopped when I got that diagnosis. It felt as
if my stomach, heart and mind had dropped out of my body. I
immediately thought it was cancer and knew the road ahead was going to
be a battle.

My first visit to MD Anderson

I was raised in Lake Jackson, just south of Houston, where everyone
knows MD Anderson is the best place in the
world for cancer treatment. I immediately called for an appointment.
The next day I learned neurosurgeon Claudio Tatsui, M.D., had accepted my case and
wanted to see me in MD Anderson’s Brain and Spine Center ASAP.

After meeting Dr. Tatsui and his advanced practice nurse Marilou
Oro, I felt relieved. My health and life were in the best possible hands.

I asked Dr. Tatsui about the potential outcomes, the recovery, the
“what if” scenarios, the best case, the worst case and the
alternatives. I think I asked every question in the book, and he
answered every single one. The next week, I had test after test, MRIs,
blood work and so on. I felt like a pincushion but knew it was worth it.

Get that bad boy out: My ependymoma surgery

My surgery was scheduled for Dec. 6, 2016. The night
before, I tossed and turned, prayed, wrote letters to my family and
counted down the minutes.

The surgery took eight hours. Dr. Tatsui successfully removed my
spinal cord tumor, which turned out to be a grade I myxopapillary ependymoma.

When I woke up, I moved all my fingers and toes, thanked God and
rejoiced for being alive, healthy, happy — and a little loopy, thanks
to the medicine. I stayed in the hospital to recover for about a week,
and the staff provided the best possible customer and patient service
I had ever experienced.

Phase II of my ependymoma treatment: proton therapy

Going into proton therapy, I didn’t know what to think. I’d heard
stories of people being tired or getting sick. My radiation oncologist
Andrew Bishop, M.D., put together a 30-treatment
plan (five days a week for six weeks) to kill off any remaining cancer cells.

My first day of proton therapy was Jan. 23, 2017. That’s when
radiation therapists Danna and Kristoffer stepped into my life. I was
nervous, anxious and out of my comfort zone, but Danna and Kristoffer
were rock stars. Once again I felt like I was in the right hands.
Later I met Sally, Ashlee, Denice and Bette. Everyone on my team made
me feel like I was family and that they were on this journey with me.

Thankfully, I did not experience any side effects. After finishing
treatment, I was relieved and at peace. My first post-treatment scan
was clear, with no evidence of disease.

Don’t be afraid

So, back to my brother’s original question: What’s the scariest
thing you’ve ever done? If I could go back today and talk to myself
before surgery and treatment, I would say:

  1. Don’t be afraid. You’re in the best place in the world with
    the brightest people in the world.
  2. The people at MD Anderson are going to treat you like
    family. They will be with you every step of the way.
  3. Have
    faith. Life is a journey, and not all things go according to
    plan. 
  4. Live life to the fullest. No matter the outcome, be
    happy and live life as if tomorrow will be your last day. Nothing is
    promised, and you should not take it for granted.

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appointment at MD Anderson
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