Thursday, January 29, 2009

Jan 29th,2009 We're Breathing !!


I am constantly being blown away by the outpouring of thoughts and concerns from so many of you. I thank you for all your well thought out ideas and suggestions, many of which I have looked into!! Here is all the latest !!


At the last consult with our ENT we came up with a pretty good compromise to the radical dissection. The compromise we came up with is called a modified neck dissection. It eliminates some of the risks and leaves the main neck muscle in tact. It still is quite an involved operation with a few day stay in the hospital but will help determine how we radiate my neck. With out looking at the nodes they usually do a general blast of you neck and throat. Also I have spoken with other doctors and Oncologists and done a lot of research about this issue. A few places will do treatment without taking out some of the nodes but the trade off is an almost doubling of radiation time. Right now we are looking at 5 to 6 weeks of radiation with a few chemo treatments to help the radiation along. Adding another month of radiation of the neck and throat in my situation, especially my weight {Mr.String Bean !} could be much more devastating in the long run and could add months of recovery to our treatment. The biggest issue is eating, the throat can close off during treatment and most likely with just the 5 to 6 weeks I may need a feeding tube to maintain my weight and strength. So the entire issue is which path has the least risk in the long run and the best chance for a full recovery, and in our minds the risk of the modified dissection is a lot more acceptable than the risk of complications from extending the radiation treatments.Unfortunately there really is not a great deal of difference in the way major centers around the country treat head and neck cancer {with the exception of robotic surgery that is new and now happening at the Mayo Clinic and in Philadelphia, unfortunately not an option with our insurance}, it all is just fine tuning the radiation and chemo to the specific patient and situation to get the most bang for your buck without totally wiping out the patient !!


I really have great faith in my oncologist and his staff, I have spoken with them several times about this. To ease my mind a bit he has set up a second opinion with a wonderful ENT he works with in Rochester who is also very well thought of. So we are still scheduled to have my tonsils out and a modified neck dissection next Wednesday, and I will meet with the ENT in Rochester on Tuesday. If I hear anything earth shatteringly different from the consult on Tuesday we won't hesitate to cancel the surgery. I do have great confidence in the ENT surgeon I am working with now, and he does fully understand what we do and what we are all about. So that is a very good thing !!


Thanks so much again for all your encouragement and warm loving thoughts, and put lots of good thought out for a successful surgery on Wednesday !! Looking forward to the 7:00 PM Vibe !!!

28 comments:

  1. Hey, breathing is very important. Definitely keep doing THAT!

    I think of you often, and I have faith in your ability to come up with the best treatment plan for you.

    We will be away this weekend (the 1 year anniversary of my mastectomy, but also the 9 year anniversary of the day we met), so we will not be in church on Sunday. But we will be thinking about you and sending you our support.

    See you soon.

    Maria

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  2. I am so glad to know that you have good doctors and so many knowledgeable friends helping you through these tough decisions... I hope that all goes well on Wednesday and on every other day as this journey progresses. My mother and Carmen both linked me to your blog. I think it was a great idea to keep folks informed this way, with minimal exhaustion, and giving us all the opportunity to coordinate our prayers and well-wishes! I will be keeping both of you in my thoughts and vibing along with the others every evening. Much love, Sarah Dunlap

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  3. Dan & Peggy -

    Just got the blog address ... so sorry to hear of your new adventure. As someone said "Another GD learning oppertunity ... " These things do make for a hell of a ride. As with my stroke 7 years ago, it changes your life. First, it scares the hell out of you then, interestingly enough, it deepens you. Makes you more aware, more conscious and more sober. Friends and family support get you through the process. Music and laughter work your spirit. After that, God or luck deturmin the outcome. Once you have done your homework, you are along for the ride, so watch with as much detachment as you can work up and enjoy the ride. Learn what you can from the experience and pass it on to others. Support groups are good for that stuff, too. Let me know if you need anything.

    Chuck Lochner

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  4. OOOEEE..so glad you're breathing, Dan!! I'm also Really glad that you have such confidence in your oncologist and his staff, and your ENT surgeon, and that he understands what you do and what you're all about...that's so vitally important!! My thoughts and good vibes will be with you and Peggy on Wednesday...I'll eat a piece of pie for you...
    My best to you both,
    Jess

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  5. We're doing the vibe now...can you feel it? And don't you like fruitcake better than pie anyway? We are on the beach in California, watching the sunset, drinking good coffee and thinking of you. (Not really, but it's 7 there now, and might be nice, so why not?)We read a few of the blogs and think you shouldn't lose your positive energy if you can help it-- we wouldn't know too sober a Dan. This horrible ordeal has shaken you BIG. Ask why is this happening in the way it is happening? Your arms, hands and throat are being threatened? Besides your dancing, foot-tapping feet, what else is more YOU? (Well, your hair, but that's problematic, too.) God tells us,"Before you call, I will answer and while you are still speaking, I will hear." We try to get all the information so we can have the mind of God. We can't: He's got the corner on ALL THAT (and all that cattle on the thousand hills) and we are grateful for your faith. Let's listen. Step by step. Also,"Although the Lord has given you the bread of adversity and the water of affliction, He, your teacher, will no longer hide Himself, and your ears will hear a word behind you, saying, 'This is the way, walk in it' whenever you turn to the right or to the left." love to you both.

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  6. Now that's REALLY weird. Our comment posted at "7:32 p.m." but it's really 10:32 p.m. Posting California time? God is definitely a funny guy.

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  7. Dan and Peg,
    So glad you are at a place of peace and confidence in your decisions. No matter what the science involved we know that the folks who do best are the ones with a positive and hopeful mental perspective. We still have much to learn about the mind/body connection but we do admit it is mighty powerful indeed.
    I have a very dear friend who is Lymphoma survivor against all odds. She attributes her science defying survival and recovery to a technique called Guided Imagery. I too have used it successfully when the stress is unbearable. Essentially it is taking your mind to areas of the body which require healing, and usually while listening to a vocal prompt mentally perform an action. Things like imagining a white light healing a spot, or a cleansing water taking away cancer cells, etc. One of the most soothing voices I have ever heard for this is Belleruth Naparstek. She has a whole series of resources available. I do own her book if you would like me to mail it out. But a tape devoted to cancer would probably be very good. It is also VERY relaxing.
    In the meantime I will continue on in the 7 PM Play and Pray healing vibrations concerts.
    Sue C.

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  8. Dan & Peg:

    Marcie and I (and the kids) are praying daily. It is such a tremendous task to go through all of these treatments! I know that at times it will seem completely insurmountable, but it is not. Several friends and relatives have been battling differing types and kinds of cancer, and all have done quite well. The new techniques and treatments seem to come along "every day", so to speak, so many options are out there. We are thankful that you have explored and researched these--you will be your own best advocate!
    You can call us any time should you need anything! It is never a problem with us.
    We will keep praying. The Lord knows all that you are going through. Psalm 27:1 "The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?"

    Don & Marcie

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  9. Dan and Peggy
    Thanks for the updates! Know that the support of many will ease this difficult time. I can give only prays and thoughts always.

    love,
    deb

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  10. Dan and Peggy, thinking of you both as you travel this very difficult journey. Hope when you look back on this time from a place of healing, you find your love has become even deeper and stronger. Dream your healing, Dan, or maybe play it. I always see your spirit blazing strongly in your music. And find people and things that make you laugh - laughter makes the hard stuff doable and bearable. Lots of love, Cara

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  11. Dan & Peggy...thinking of you every day..having dinner with the 'gang' (Cheryl,Dann,Peggy,Mitch,Don,Steph,Rachel, Joe, Ron)..just paused at 7 to send you loving thoughts and good wishes...we'll all be with you in spirit on Wed...love you, Pam

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  12. Dan & Peggy, Heartfelt support for both of you. Will send prayers and lots of positive support on Wednesday. Please let me know if you need any help with anything, and know that your network of friends is here, above, below, all around, to help. Looking forward to sharing a 'chune and a tall tale ... soon!! With love, Susan Hamlin

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  13. Dear Dan & Peggy,
    Oh, gee, we just got Dan Berggren's newsletter. We'll definitely be sending the nicest, best vibes we can muster at 7 your time, 8:00 in Nova Scotia (8:30 in Newfoundland but that's neither here nor there!) And keep posting!
    Love,
    Lani (the puppetmaker from Sagamore) and Edward who now reside in Nova Scotia.

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  14. Dan,

    You and Peggy are in my thoughts.

    You just HAVE to recover fully from this. We all will miss your dancing and endless energy on the stage.

    Besides, who's going to teach me how to play that crazy instrument if you don't?

    Know that you have a gazillion fans singing along with you on this journey.

    In wellness,

    Carol Smalley

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  15. Dear Dan and Peggy,
    Wishing you both the best of strength, support, and confidence in the love of all of your friends and family, and each other, now and always. Be well, and if there is anything at all that I can do on this end, please don't hesitate to ask. You will be in our thoughts and hearts on Wednesday.

    We love you both,
    Chris Koldewey & Joy Bennett

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  16. JohnnyMike & CharmaineFebruary 2, 2009 at 7:17 PM

    Dan & Peggy,
    Know that we have you in our thoughts and prayers!
    Will be thinking of you at 7!
    Sending love, prayers and angels....

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  17. Sending you both love and thoughts and prayers for healing and recovery, endurance and confidence in your medical personnel and your own choices. Jeannine Laverty

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  18. Dan and Peggy,

    Our thoughts are with you. Be strong and have a speedy recovery.

    Armand and Carol

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  19. Hey, Dan

    I learned this when I was nine. If you have your tonsils out and the nurse wakes you in the middle of the night and says "drink this" and you say "what is it?" and she says "milk"--look out--it's milk of magnesia!

    My love to Peg,
    Henry J

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  20. I know that life is financially difficult for a lot of folks right now but I would like to post a suggesion that would help Dan and Peg.
    As professional musicians who rely on gigs they will be on the shelf for awhile. Being sick in America is a costly proposition. If you are able and feel lead please consider a money shower for Dan. It does not have to be huge amounts, just as you are able. But being able to not be concerned with this issue eases anyones recovery. Vibe on!

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  21. Hi Dan and Peggy,

    The day before my mastectomy surgery, I decided that I and my doctors were all in God's hands, and that I would leave it all up to God. That decision really helped me relax and alleviated all of my anxiety for that last 24 hours before one of the scariest things I have ever faced.

    I will be praying today that you have peace and relaxation as you get ready for tomorrow, and I will be praying that all goes will in your surgery tomorrow.

    Good luck!

    Maria

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  22. Dear Dan & Peggy,

    Just read Dan B's newsletter and learned of your challenge.

    We have been fans of yours (and Dan B.) since the early 1990' always trying to catch a concert when we are in the A-daks and have enjoyed many evenings in Inlet & St. Williams listening to your wonderful music, and enjoying your CD's when we come back to the "other world".

    Our thoughts and prayers will be with you as you embark on this journey. It will not be without challenges but God will be with you both. Peggy will be a fine coach for you.

    I like this 7 pm "send good vibes" and we will join in this positive power. God Bless you both, Pat & Leon Phelps, Ithaca

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  23. Dan and Peggy,

    My thoughts and prayers are with you as you go through this journey. I will also be joining the 7:00 'vibes'.

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  24. Dan and Peggy,
    I have been a fan of yours for several years and have frequently seen your performances in the Lake George region---Silver Bay, among them. I am also an Advanced Practice Nurse in Palliative Care Medicine. I have seen many people in your circumstances.
    After reading your blog comments, I will reiterate these comments from someone who has "been there" in terms of dealing with a chronic disease:
    "Once you have done your homework, you are along for the ride, so watch with as much detachment as you can work up and enjoy the ride. Learn what you can from the experience and pass it on to others."--Chuck
    As hard as it is to be reminded of, we are not in charge---only God is.
    All the best as you continue your difficult journey. My prayers are with you,

    Colleen

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  25. keep thinking positive thoughts. I will send reiki this evening.
    kitty macey

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  26. Dear Dan and Peggy, I have been sending you both 7 pm energy this week -- and, of course, since it's from the Cure Capital of the Adirondacks, it's super-energy! Know that many Saranac Lakers are pulling for you. Loving, healing thoughts from Sue Grimm et al

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  27. Dear Dan & Peggy,

    We've been following your postings and again want to say that we are cheering you on from Ithaca and you are in our thoughts and prayers. Keep up the great work and your "team" of docs, techs and No. 1 coach, Peggy, will get you thru.

    Kind regards, Pat & Leon Phelps, Ithaca, NY

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  28. Dear Dan and Peggy,

    It has been our pure pleasure to have the opportunity to see and hear you perform in Inlet in mid-July and at Homer last weekend. Your music is such a joy to hear and it's GREAT to see you, Dan, doing your wonderful playing and singing. Both concerts have been highlights of our summer.

    Our continued prayers and best wishes to you both as you continue to go forward, 'step by step' and 'hand in hand'.

    God's Blessings to you. Fondly, Pat & Leon Phelps, Ithaca, NY

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