Wednesday, March 25, 2009

3/25/09 To taste is human to swallow divine


Before having head and neck cancer I often took for granted all the complicated processes that happen in your mouth. How the salivary glands keep everything moist and help to protect your teeth, how your taste buds give you a good idea of the food you are about to eat and how swallowing, which is a complicated function using many muscles is something we just do. Well whatever shape I am in after these treatments I will never take any of these great gifts for granted! I am in the middle of week three of treatment and on a positive note my energy level has picked up a little bit and I have been able to walk with Peg and Zeus {our lab, border collie mix } a few times around the back field each day, and truly loving it! Unfortunately the radiation has started to catch up with me and my throat has become really sore with swallowing being quite difficult.I was given a prescription for some liquid that numbs my throat and that has helped a little bit, but it will only be a short term fix. Food has begun to taste really strange,and especially the after taste. My goal is to be able to keep eating all I can this week and then begin to use the peg tube next week.I was aware of all this going in, but when it starts to happen it certainly is a different story all together! I think we are going to take the juicer and the blender for quite a ride.

On Monday we went to see a naturopath who is part of Clifton Springs hospital. He is a really nice guy and will help me to have a total body healing approach once the treatments are done and we need to put things back together.I think it will be a big help as we go through this entire process. Monday is the second Chemo treatment and I hope we’ll be able to soften some of the side effects with the knowledge of how my body reacted to the first treatment. Time will tell. But right now I am trying my best to take one day at a time, and pull the best from each day we can !! Today was near 60 and there really was not a chill in the air at all. The farmers up the road are tilling the fields and the sweet smell of good soil is everywhere !!

I continue to be so humbled by the graciousness and concern from so many of you. I can’t tell you how much it lifts us up and helps us to get thru another day. This circle of hope as I like to call it is truly a gift that continues to surprise us day in and day out. I can’t thank you all enough and when this process is done I will never forget how kind and caring so many of you have been. Speaking of amazing, my wonderful wife Peggy has been great through all of this and I really don’t know how I would do this without her. My sadness is how stressful this is for her, but I am constantly amazed at how gracefully she has been able to juggle this, teaching and performing. In so many ways I feel so fortunate. I do hope to see some of you at the labyrinth walk in Oswego on Saturday. If not I’ll look for you at seven! On Friday we’ll have three weeks down and four to go! Oh and humor me, the next time you eat a really nice meal, give thought to the entire process that makes that possible, it really is amazing.

18 comments:

  1. Thanks for teaching me to enjoy my food, instead of just wolfing it down!! Approaching the halfway point! Yes! And I know you have always known that Peggy is a pretty amazing woman! Now you get to witness the true depth of that......"Grace every step of the way, there are gifts to receive, if we only believe. This beauty, this moment, this day!" To quote a great songwriter. Hugs, Donna and John

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  2. I went for a walk after I posted and I realized I re-wrote the song a little. Sorry Peggy.

    Hugs.

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  3. You continue to be a wonderful teacher. You teach us wonderful, beautiful music, and you teach us amazing life lessons. We are so incredibly fortunate and so incredibly grateful to have you in our lives. Know that we are all right there beside you, every step of the way, and that you and Peggy will never walk alone.

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  4. Hey Dan, I'm sorry it's getting harder to eat and to enjoy food. I had several weeks during chemo when everything I ate tasted like someone else's dirty socks. Blech! That's not a taste you get used to. But thankfully, we do heal and food starts tasting normal again.

    I was just thinking yesterday that there is restaurant I visited once a week during chemo, when I was attending class on campus, because they have this lentil stew with chicken which was one of the only foods that tasted the same every time I ate it during treatment, and how I want to go back and eat it again, but am afraid it will taste funny now. But perhaps I will give it a shot, as I have always enjoyed it, and I should not take such simple pleasures for granted.

    I'm glad you are taking walks. It definitely helps maintain a good mood, especially when the earth is renewing itself in the spring.

    Your attitude is amazing, and your empathy for Peggy is very sweet. It is hard to see our partners worry about us during treatment, but we are so lucky to have someone to take care of us. It's good that you have each other, and I am sure that she is grateful every day that you are getting good care and that she gets to keep you around to take walks, make music, and grow old together.

    I continue to think of you each day, and I will definitely pay more attention to when and what I eat. It is easy to forget to appreciate the simple things, even so soon after treatment. I have organized a team to participate in the American Cancer Society's Relay for Life event at Syracuse University, which takes place this Saturday night (6pm to 6am) and we have already raised $615! If any of your other blog readers would like to donate, here is the link:

    http://main.acsevents.org/site/TR?pg=team&fr_id=13971&team_id=436949

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  5. hi dan! just sending a 'thinking of you'. thanks for continuing to keep us updated as things go on. im sure you feel like heck in some ways, but you're almost halfway done!! as the poster in every elementary school with the kitten hanging by one paw from a tree branch says "hang in there!!" lol. im a weirdo, i know. i've been running and i often think of you when i run, so in addition to sending the vibes at 7, that's also a time when im sending some healing your way, and imagining us lacing up on early mornings at allegany! or imagining you and peg riding your bikes in the early morning at allegany too! stay strong, and we're thinking of you. love, stef and the crew over here.

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  6. Hi Dan and Peggy, I haven't been able to find a labyrinth in Florida that I can get to. However, in my search, I discovered what is known as a "finger labyrinth walk." So I will enlarge the Chartres Cathedral copy and join you on Saturday. My heart will be engaged, as well as my finger, if not my feet.

    I also want to say how much I appreciate your willingness to share what you're going through. It's good to be reminded about what I take for granted on a day to day basis. Bethyl

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  7. Hi Dan and Peggy,
    I can't be there for your labyrinth walk, but I printed out the one from your blog page and I have gone over it several times by hand in different colored markers. It's so cool! How awesome to think they have been walking that one for about 800 years. Please post a photo of the event on your blog page. There is an outdoor labyrinth at Bethany Retreat Center in Frechville, Pa. which is not far from me. I don't think it's as large as the one in Chartres Cathedral, but it's in a lovely setting. When I go there in May for a retreat, I will think of you when I walk the labyrinth.

    I hope you can continue to take walks. It is such a beautiful time of year. When I was at Bethany Retreat Center several years ago, there was a resident dog, (who has since gone on to heaven.) It occurred to me that dog spelled backwards is God. So I came up with the phrase, "Take a walk with your dog...take a walk with God."

    Yesterday at 7:00 I was listening to your "Change of Seasons" CD in my car on the way to a dulcimer practice. I thought of you and sent vibes!

    Cindy M. in PA

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  8. Dan, how fortunate some of us "men folk" are to have a very special woman in our lives. To share in the good times and then to be with us during difficult times, never asking for anything more than our love and companionship. I wrote a song years ago for my wife Linda. The refrain part of the song is something we have been saying to each other every night before we go to sleep, for I don't know how many years " Good night, I love you, I'll see you in the morning" We are truly blessed. Best to you and Peggy.
    Andy and Linda Caruso

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  9. Just savored homemade bean soup from Tim at the store in Glen. Thanks for reminding me of what a gift taste is. I couldn't swallow safely for a while after my stroke and you remind me again of what a gift that natural act is. So glad you're getting people lined up to assist you in the recovery process. There's a lot of wisdom and humor out there that will be helpful. May dogs and walks and crocuses be signs of hope and the love in the universe to you and Peggy!

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  10. Dan and Peggy,
    The blog has been such a learning tool for me. Thanks for all who has shared their stories of faith and healing with cancer.
    I believe this force will help with the healing. See ya at 7 vibe!
    love,
    deb fox

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  11. Hi Dan and Peggy -
    We are thinking of you all the time and are playing your CDs for Annea often. And we were so pleasantly surprised this morning to hear a bit of Isleford in between stories on Weekend Edition Saturday on NPR! So, people all across the country got to hear you this morning! We wish we could go to the labyrinth event today - it sounds wonderful. We will be with you at 7PM!
    love, Jenny & Jim & Annea

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  12. Hey, D & P

    Hope you are faring well through your chemo and radiation. I'm going to appreciate the taste of food a lot more now. I dont' know if you got the last message, but I was wondering if you got the package I sent. If you didn't see the message, I guess you were wondering what the hell it was with no note or anything.

    Anyway, you can get in touch directly through my email:

    http://jdnelson1111@yahoo.com

    Let me know if the package arrived all right.

    Feel better,
    Jim

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  13. Hi, Dan & Peggy! Hope that you enjoyed the Labyrinth event, and got to see lots of folks. I'm going to take some of these great suggestions about printing the picture, and finger-walking! Just finished recording another CD with Inisheer, and one of the cuts is Stone's Rag, using my dulcimer ... made me think of you! I'll be vibing @7 -- all the best, Sue G.

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  14. I found an actual labyrinth, practically in my own backyard. The Unity Church of Clearwater had built a permanent one in front of their church, which I only found out about on Friday. So I did the walk there at one o'clock on Saturday.

    Bob and I attend a Buddhist study group in Tarpon Springs every Saturday at 4, and so I took the paper labyrinth with me and did the finger-walk too during our regular period of meditation.

    I also want to tell you that I'm rather amazed at how often I find myself humming "For the Love of Friends." You've definetly created some very good vibes resonating through the atmosphere. That HAS to benefit you as well as the rest of us.

    Peace and Love
    Bethyl

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  15. DAN AND PEGGY,
    I MET PEGGY IN HOLLAND PATENT - WE WERE WITH DONNA AND JOHN - HAD TO LISTEN TO PEGGY - SO IS WONDERFUL IN ALL WAYS!! DONNA STARTED A FEW OF US IN A SINGING GROUP AND IT IS WONDERFUL.
    AS FAR AS YOU - GOD BLESS YOU - YOU ARE HANDLING THIS AS IF IT WERE JUST ANOTHER TRIAL THAT GOD PUTS US THROUGH. I HAVE BEEN READING YOUR BLOG AND I AM REALLY IMPRESSED WITH YOU AND YOUR COURAGE. MAY GOD BLESS!!

    GINNIE TRASK

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  16. DAN - YOU ARE AN INSPIRATION TO ALL OF US WHO TAKE OUR EVERYDAYS AND DON'T TRULY THINK OF HOW FORTUNATE WE ARE. AND YES I WILL NOW CAREFULLY EAT AND SWALLOW AND ENJOY EACH THING THAT GOD IS ALLOWING MY BODY TO DO FOR ME!!!

    GOD BLESS!!!
    GINNIE TRASK

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  17. Hey,Dan,

    I was walking down the street in San Francisco the other day singing "Live Free or Die", when a guy on the street - walking a bike and wearing a surgical mask - started signing along! Zounds!!!
    My name is Lesley Ferguson. You taught the song to me in the mid Eighties when I was a Forestry student in Syracuse. I met you on the street and we hung out a little bit - you might remember.
    He learned it from Reed Desrosier. His name is Bryan Hastings,from NH, BTW.
    I still have your promotion brochure from those days, with that great drawing of you. I've stayed a fan - I'm sure there's many like me that you are unaware of.
    I googled you and there you (mostly) were!
    It sucks so bad that you're sick. Just relax and let people fuss over you. It's easier and makes them feel better. But harder for you.
    Your journey has taken you very far and it ain't over yet - hang in there, and let people love you!

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