Throat and salivary gland cancer survivor: Why I finally got a feeding tube

I resisted getting a feeding tube for as long as I could. I knew I’d
have to use one eventually, but I didn’t feel ready for a long time. I
was afraid it would make me a lesser person or less attractive, and I
worried that it would completely change my lifestyle.

Now that I have one, I must admit: my lifestyle has
changed. But I’ve gotten used to nourishing myself this way, and I’ve
adjusted to eating seven times a day, instead of two or three.

Today, I use my feeding tube as an education tool. I don’t draw
unnecessary attention to myself, but I’ve started eating out in public
more. I’ll sit near the back of a room and have a tray on my lap under
the table. Sometimes, my 4-year-old grandson helps depress the
syringe. And if someone asks me questions, I explain what I’m doing
and why. I think it’s a great learning opportunity. Because I do still
eat, I just eat differently.

A salivary gland cancer diagnosis finally forced my hand

I started having real problems eating and swallowing in 2000, about
15 years after I received chemotherapy and radiation for stage III nasopharyngeal carcinoma
(a rare type of throat cancer). I’d often choke, and had to
figure out ways to cough up pills or food that got stuck in my throat.

I had a feeding tube installed in February 2016 to supplement my
diet. But I wasn’t using it regularly, and I kept on losing weight.
Eventually, I was diagnosed with cancer-induced cachexia, or wasting disease. My body simply
wasn’t getting enough nutrients.

In April, I started aspirating (or getting in my lungs by accident)
some of what I ate and drank, too. I developed pneumonia as a result,
and fought that infection for five months. I knew I had to start using
my feeding tube exclusively or I was going to die. But it took being
diagnosed with stage II salivary gland cancer in September 2016 to
finally force my hand.

The decision to embrace my feeding tube

By this point, all of my meals were already being pureed in a
blender. I’d been drinking them for months. But I started using my
feeding tube exclusively on Sept. 20, 2016. Here’s why.

It was my 49th birthday, and I’d just been to see Randal Weber, M.D., at MD
. I thought I was just having my annual checkup. But
Dr. Weber discovered a new tumor in my salivary gland on the left side
of my jaw. He recommended surgery to remove it, which meant I’d be
receiving all of my meals through a tube anyway. So, I went ahead and
made the decision. I haven’t had any food or drinks by mouth in 14
months. I most likely never will again.

My biggest challenge today

Since then, my biggest challenge has been finding a liquid food that
my body can tolerate. I was mainly a vegetarian before I was diagnosed
with cancer the second time, but most meal replacements involve some
type of meat protein. I’ve tried a few with salmon or chicken, but
they just don’t agree with me. For the first four months of tube
feeding, I had diarrhea after every meal. That stopped
eventually, but I’m still excited to be trying a new product soon.
It’s made from lots of organic vegetables.

I do still miss the taste of some foods, but this is my reality, so
I’ve accepted it. I’m just happy to be alive, and I’ll do whatever it
takes to survive. Now, I try to find pleasure in the scents of certain
things, like bacon frying or Mexican food cooking. I still love going
out to eat with friends and family. I just take my food with me and
eat under the table.

Mostly, I don’t want people to feel sorry for me. Because I’m eating
just like you are. I just do it a little differently.

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