Saturday, May 23, 2009

5/22/09 An Epiglottis is a terrible thing to waste!


As many of you know, the epiglottis is a flap of tissue that sits at the base of the tongue and keeps food from going into the trachea, or windpipe, during swallowing. During treatment for head and neck cancer, especially cancer at the base of tongue the epiglottis can easily become damaged from the intensity of the radiation treatments. This can result in long rehabilitation times before patients can eat or even attempt to eat. With this on our minds I had a barium swallow test done earlier this week with my speech pathologist to see if everything was working properly. Even though there is still a great deal of pain swallowing, my epiglottis is doing what it is supposed to. This is really good news! I was cleared to try eating liquids and some soft food. So we have had some soup, yogurt, pasta, eggs etc. this week. Even though the throat is still sore when swallowing it is really nice to start supplementing the diet with some real food besides what I put in the peg tube!! My hope is that in time the throat will become more comfortable with eating and it will be easier to regain the weight I need. The old taste buds still aren’t sure what’s going in there but it is hoped that will change in time too!!

I saw both the chemo and radiation oncologists this week and they are really pleased with my progress. I don’t see the chemo oncologist for a month now and I no longer will need to go and get extra fluids. I also will not need to see the radiation oncologist for a month. We will have a pet scan on June 22nd to see how everything looks and I will be able to speak with the doc that day about the results, and that is really great! The mucus and dry mouth are still an issue but seems to be getting a little bit better every day. So overall very good news this week!

Peggy and I are playing at great Camp Sagamore on Saturday night to do a little concert for the clean up crew that volunteers to come and help open the place for the summer. It is really my first overnight out since January and we are both really excited about it! I’ll bring all the peg tube stuff but also see what I can try during mealtime that might be soft enough to do the trick. I’m not singing yet but it will be wonderful to play! So we are feeling more hopeful by the day. Thanks so much again for all your continued support and wonderful vibes, it means so much to Peggy and I. I hope that you all have a wonderful memorial day weekend and we’ll look for you around 7:00 pm. Be thankful for that epiglottis you have that keeps your food headed in the right direction. Where would you be without it ?

13 comments:

  1. This is great news Dan! I am so happy for you and Peggy. And Sagamore! Wonderful! I have to tell you, I am hearing a Dan song called. Where would I be without my epiglottis?! Hugs, Donna and John

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  2. Dan:

    I think Donna is right.

    Good news to hear.

    Terry Manion

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  3. Oh, I loved Sagamore when I went to Peggy's workshop weekend last summer. I hope you have a very healing weekend there.

    It took my tastebuds time to recover from chemotherapy, so I'm sure it will take longer for you... remember, both radiation and chemo target fast-dividing cells. That's how they kill the cancer cells, and that's also why they affect our tastebuds, hair, mucous membranes, etc.

    But it will all eventually heal and your sense of taste will become normal again. I remember that during chemo and for a couple of weeks afterward, everything tasted like someone else's dirty socks! Believe me, I was so grateful when that started to fade!

    I hope that we will see you soon at church, now that you are starting to get around. It was great to see Peggy there last Sunday, but I missed seeing you next to her.

    Take care,

    Maria

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  4. Aspiration without the epiglotis-not good. Thankful for the news. Hope your weekend is great and you not only find food you can eat, but truly are able to enjoy it. Thanks for your posts your in our prayers. Paul and Kristi left Hawaii on Wednesday and will be traveling across country arriving in VA June 19th. Just thought I'd share.

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  5. I second the song call from Donna on "where would I be...."

    Also, try some imaging exercises with Peg - I'll bet you have been doing lots of that. But try asking [wide awake], maybe with a little music, for an image for healing the soreness in your throat and for allowing you more ease in swallowing. Keep your intent in mind - close your eyes and drift into whatever image comes to mind. Then turn it into a little instant "messaging" meditation and think about it or say it to yourself or have Peg do little imaginal journeys with you into the image. I'll bet you'll find your healing jacked up a notch.

    Our love is with you -
    Wanda and Ron

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  6. Hi Dan and Peg,

    SO delighted to hear all your good news! Peggy, I hope all this progress is making things a little easier on you, too!
    Hope you both have a wonderful 'first over-night out' together!
    Here's to more and more eating!
    See you at 7 (and 24/7)
    Love, Jess

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  7. Cool photo and good news!

    Love, Nancy

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  8. Happy Anniversary you two lovebirds!
    Great news Dan. I guess there's lots of body parts that just do their thing without us thinking about it - that is until they quit working. It sounds like your body is slowly but surely on the mend. Hooray!
    As for the song......how about to the tune of Shenandoah.....Oh, Epiglottis....
    Hugs, Cheryl and Dann

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  9. So glad you got to Sagamore for your first night out. What a treat that must have been for everyone present. Great news about the functioning epiglottis! Glad you have the peg tube;imagine how you'll thank it as you are able to let go of it when it has finished its job. Glad the earth is green and cool, around here at least, and the smooth, creamy, icecream is in local icecream shops. Might help your visualizing.

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  10. Dear Dan,

    God Bless You! You continue to be in my prayers for continued recovery. I'm so happy to hear that you are now able to eat a little something. I look forward to your next post and the wonderful new progress you will have made. Take care.

    Theresa Costello

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  11. deborah forest hartMay 28, 2009 at 6:17 PM

    We've a friend from the Vineyard visiting with us in Hartland for a while. I got caught up on your blog this morning. I must say, I have been waiting all day for an opportune moment to interject into the conversation "an epiglottis is a terrible thing to waste." I almost got it in during dinner. But alas-- no. I'm still stuck with it. See what you have done to me??? In other (but related) news of the day, just after dinner, I had my first black bear sighting in the 23 years I have been living in Hartland. I guess it was worth missing the opportune epiglottal moment for that. (Will just have to wait for another day.) Hope each day for you is much, much better. (Okay--- I am impatient for you, too. :-) Hugs, d

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  12. deborah forest hartMay 28, 2009 at 6:26 PM

    Hmm-- I'm thinking I'm hearing this theme tune more like Oh Tannenbaum: Oh Epiglot, My Epiglot. . .

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