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Looking Down the Barrel of a Feeding Tube

Barbara

Byline: Barbara Blades

January 2005

The last time I can remember eating normally was January 2005. My birthday is on January 5th and I had already planned on eating someplace special. On January 4th I had a biopsy, and following my birthday on the 7th I learned I had stage 3 squamous cell carcinoma.   It was in the lymph nodes of my neck and in the base of my tongue.

About 2 weeks later I went to a restaurant called “The Aquarium”, my favorite, seafood.

That year I had chemo, radiation, and a feeding tube for a brief period of about 2 months. In October the cancer was back and I had a radical neck dissection (they cut open your neck from ear to ear) to remove malignant or suspected lymph nodes.

Swallowing was a monster and I was obsessed with food. I had to learn to eat all over again. The food I did get down was either tasteless or it tasted awful due to the radiation. I lost over 100 pounds in less than a year.

What a struggle! Trying to get a simple bowl of cereal down was a pure chore.  It was bad enough I could barely swallow, but the compromised taste buds and not being able to open my mouth wide enough to fit a spoon full of food in made it that much more unpleasant.  Yet, I kept at it.

Jump forward to 2008

Then in 2008 my cancer came back and I had a partial glossectomy (the right side of the base of my tongue had to be removed and was rebuilt with my pectoral muscle).  When I woke up from surgery I could not talk, breath, or eat on my own.  I had a tracheotomy tube for breathing and a feeding tube for nutrition.  The trach tube came out a few weeks after I got home. The feeding tube stayed in for over a year. One year, two months and ten days to be exact.

This time around I had lots of speech and swallowing therapy. I’ve also had Botox injections to open the sphincter at the top of my esophagus. The Botox was a temporary solution that didn’t work. I ended up getting a procedure where they cut my esophagus sphincter muscle as a means of providing some relief.  It worked okay for about a year but it has steadily gotten worse. I struggle more and more and am now looking down the barrel of a feeding tube in a couple of years.

Here and Now

So, here I am in the present. I have a slight speech impediment, most of my taste buds are gone and I struggle with every bite of food. No food can go down without a liquid chaser to push it down.  I can drink water (favorite choice), milk, coffee and a milkshake if I let it melt first. Soda pop is out of the question. I cannot eat acidic foods, so citrus and tomato-based are out. Spicy food is out – even “mild” is too much for me.  I have minimal movement of a now shorter tongue and food gets lost in the right side of my mouth due to some paralysis (or nerve damage) on that part of my tongue.

Eating out requires a strategy.  I still go out for coffee. If I am invited out with friends I get the least amount on the menu, eat only the smallest bits, try not to choke, drink tons of water and simply let the other person or people do all the talking.   Always left with almost an entire plate of food, I always get a doggie bag.  If I do talk I simply do not eat. My friends will say “no problem” but at some point will ask me a question just after I put a fork of food in my mouth.  A very awkward moment.

So far I have not aspirated though I’ve come dangerously close. I do eat just about anything but in extremely small quantities and suffer from reflux. I can keep the reflux down if I watch what and how much I eat.

Everywhere I go I have a “spit rag,” a handkerchief because I cannot swallow or manage my own spit.

Faith

What helps me is my faith. It is my strong faith in Christ that gives me peace in all this. Some ask how I can have so much faith and peace despite my situation. The world is filled with terrible things – many far, far worse than what I’m going through – but my faith gives me peace in all of this. I’ve stopped obsessing over food, and simply, I enjoy what I can enjoy. I can’t control everything about my situation just as my doctors cannot find a solution to every ailment. Eating is a social convention in which I cannot fully participate.

So, I let my milkshakes melt. I buy fries, eat less than half and give the rest to the birds.  I let my friends talk.  I find ways to eat food so it will not get lost in my mouth and can go down with water. Many times I simply pass on food because it hurts my throat to struggle so hard. You’d think I would be thin, but because I eat so little my body is almost constantly in survival mode.

I enjoy life!  I enjoy what ability I do have right now. And, in a couple of weeks – I’m going zip lining. I will not be able to eat at the concession stand.  I will see people with popcorn and soda pop (I can’t sip liquid through a straw) and will keep walking, thinking about lunch only when I get home. My faith has allowed me to find peace in a frustrating situation but that doesn’t mean I don’t get mad sometimes. It means I don’t stay mad.

And now – I think I’ll have a glass of Ovaltine.  🙂

P.S. It is true that doctors have not offered any solutions, so considering the problems I’m having it’s inevitable for the tube, but that does not mean something new cannot come up that would offer a different solution.

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Food for thought is providing comment posts

How does your experience compare with Barbara’s?

What is one thing you learned from Barbara that you could apply to your own situation?

If you’ve experienced a similar situation, what helped you cope with your experience?



6 Comments On “Looking Down the Barrel of a Feeding Tube

  1. Lisa I. (Facebook post)

    Barbara you are a very brave warrior! My dad lives on a feeding tube and I am thankful to have him in my life. I am praying something is found to make eating easier for you and possible for my dad one day! Xo

    1. Barbara B

      Lisa,
      going through all of this I have met so many people dealing with life altering conditions and have found wonderfully strong people.
      Our bodies are made to eat, a simple task in itself but the process it takes is amazing. I hope a day can come where people do not need tubes to eat.
      My best to your father and those around him who deal with his physical limits.
      God bless.

  2. Aimee S. H. (Facebook post)

    Thank you for sharing. I had a partial glossectomy in 1998. For the most part I ate normally until January 2012. It was a struggle the first year accepting my loss. I can swallow fluids and foods that melt. My faith has sustained me but I too have days of sadness and grief. Eating is a social activity. It helps to read how others in the same position deal with this. You do not feel alone. Thank you!

    1. Barbara B

      Aimee,
      being surrounded by people who simply have not idea of the struggle we face; you are so right, it’s a comfort to know that others deal with the same thing. I also find hints and suggestions that help me in daily struggles by others.
      Take care.

  3. Ed Steger

    Barbara,

    Thank you for taking the time and energy to share your story with our community. Your story isn’t about me, but our stories are very similar. My last real meal was in 2006. I was diagnosed with stage IV squamous cell carcinoma in mid-2005. I had four separate recurrences, each requiring its own brand of treatment… radiation, chemo, and/or surgery. They used my fibula bone to rebuild my jaw. I too could not breathe or swallow on my own following a 12 hour salvage surgery. With determination and endurance I learned how to eat in a manner similar to yourself, but have found it easier to live off of liquid nutrition for 98% of my calories. Solid foods require careful focused concentration and always a heavy liquid chaser. I read your story more than a dozen times thinking back to all the obstacles and hardships that have been overcome or come and gone. You are courageous to put yourself out there and I hope others will join you (and us) in increasing the awareness of how something as simple as a swallow can be so life changing.

    Ed Steger
    President, National Foundation of Swallowing Disorders

    1. Barbara B.

      Ed,
      there are times when I get down but end up feeling very fortunate it when I read about struggles others have that are far worse than mine. Your struggles have been immense and is humbling to me. I hope my (our) story and the stories of others will give hope to many.

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