Saturday, February 21, 2009

2/21/09 Counting Down


Yesterday we met with the both the radiation oncologist and chemotherapy oncologist at the Clifton Springs Cancer facility, about an hour from home. The facility is really great and has the latest IMRT radiation that is needed to help minimize damage to surrounding tissue. All the staff seemed really wonderful and attentive to our needs. Dr. Albrecht met with us for over two hours and answered all of our questions. He made no bones about how miserable the treatments can be but he feels that we have a reasonably good chance of knocking this out. Because the main cancer site is actually at the base of my tongue, surgery to get rid of all of it is out of the question. This means we will have to have a little longer treatment schedule, seven weeks with radiation five days a week with chemotherapy {Cysplatin} once every three weeks. Next Friday I will be back at the radiation center doing a simulation where they will do a three dimensional mock-up of my head and neck and make the mask to protect the exterior parts of my face and neck that do not get radiation. We are looking at actually starting the treatments on or around March 9th. The first week of treatments they will put in the feeding tube to make sure that I can get enough nutrition over the seven weeks. The secretary checked with our insurance and we will have a $20.00 co pay for each radiation treatment. She told us about a $750 grant the hospital offers and we do qualify, so that is a wonderful thing and will most likely take care of most of the radiation co-pays!!

I received a message on the blog from Lee Rebalko who went through this treatment in Sept. of 07. He mentioned the possibility of pursuing proton radiation which is new and less destructive to surrounding tissue than the IMRT radiation can be. I did a lot of research on this and found out there are currently six facilities around the country that do proton radiation. I contacted three of them in Florida, Mass., and Indiana and I was able to fax them my specific biopsy information. All of them did get back to me and unfortunately, because the main site is the base of tongue, I am not a candidate for this technology, and all of them suggested that right now the best coarse of action is the IMRT radiation at a good facility that does head and neck cancers on a regular basis. So this makes the facility at Clifton Springs seem like a good choice. Thank you Lee for your insight and suggestions, they are greatly appreciated.

I am starting to feel a little stronger every day, solid soft foods are working and I hope that over the next two weeks I’ll be able to put on a few pounds and get a lot of strength back before we start radiation and chemo. There are a lot of unknowns going into treatment and I am going to just have to trust that everything will work out for the best. I am so aware of how important the positive attitude is and I hope we can maintain that throughout the whole process of treatment and recovery!! I am also aware of the power of our collective group vibes and that gives me great consolation. I am so thankful to all of you for your wonderful insights and loving support; it lifts us up more than any of you will ever know. I look forward to hearing from you and the 7:00 pm vibe. I am going to close this post with a wonderful quote that Lea Boylan shared in her comment.

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot kill friendship
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the resurrection
Our greatest enemy is not disease, but despair.

22 comments:

  1. So glad to have found you both and to know I can stay current with what's going on in your treatment and in your lives. Feel the hug and good wishes I'm sending to you...

    love, Linda

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  2. Well, you've done your homework, you have a plan, and you have goals for the waiting period. You are as on top of this thing as you can be!

    While I was going through chemo, I would occasionally meet with the clinical social worker at my oncologist's office - there were a lot of emotional lows during my treatment, especially in the first few days after infusion. I used to struggle with the desire to maintain a positive attitude and the reality of those painful emotions. She told me that you can have a positive attitude and still find this process difficult or even depressing at times.

    I tell you this because I struggled on some of those days with keeping my pain to myself, for fear that people would think I wasn't "staying positive". I hope that you don't have very many low days during treatment, but if you do, I hope that you will share it with us here. When I wrote about these things on my own cancer blog, the responses I got from the people that loved me really made a difference. I hope that you will let us do that for you if you need it.

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  3. Dan and Peggy,
    Thanks for the update and for sharing the quote from Lea. We think of you often and are grateful that you are letting us into your life at this difficult time. It helps us too.

    It sounds like you have a clear plan of what you will be doing and why. That's a huge step. As for the unknowns.....that's the tough part. But so far you have met each challenge as it has come up and dealt with it. You'll continue to do that and soon will be on the other side of this looking back on a not so fond memory.

    Until then, you have a large group of people helping to hold you up and keep you going in that positive direction.

    Love, Cheryl and Dann

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  4. You're playing the dissonant chords as they are written but, knowing you a bit, I believe you're up to improvising as your own spirit directs you. And that Peg will provide the harmony for your ongoing song.
    Be well and at peace,
    Cara

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  5. Hi Buddy,
    What great news - longer treatment, which really makes me know that the light at the end of the tunnel is not an oncoming train. It'll be tough, but successful. Great to have a mini vacation with you two. Peggy isn't quite in the stars with diamonds yet, but she's getting there.
    Can't wait for the square dance..actually can't wait to get out there and do some taxi stuff with you.
    Peace & Love
    Woody

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  6. sending tons of love your way and keeping you as always in my thoughts and prayers - its good that you have a plan and an awesome team lead by your lovely and talented wife Peggy - sounds really good that the doctors have answered all of your questions and that it may be a longer road to recovery but it will be a journey that we will take with you and support you all the way to the finish line where you will be stronger and will eventually be able to enjoy mom's lasagna and sticky buns once more *hugs* much love Heather

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  7. Glad to hear that a solid plan has come together. Good luck on the anti-weight-watcher's plan......eat more pie!

    Best wishes,
    Eric & Joan

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  8. hi dan (and peggy!) echoing the sentiments of others above, we're all glad you feel our love coming through at 7 pm, but WE get so much out of these posts and by being informed and included in what's going on with you, we're at least able to feel like we're there in it with you, and are better able to target our prayers! your attitude, and your search for answers and the right treatments throughout all this have been really, for lack of a better term, impressive, to me. you're handling this awesomely and even though things will be a little sucky for a bit, we're loving you from here and are KNOWING when this is all over, you'll be fine. we can't wait to hear your music again. love stef, val, tim, matt, orchard park quakers!

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  9. dan & peggy,

    i am remembering our walk through the trillium and trout lillies a few years ago....i think of that walk often - such beauty and strength in those seemingly fragile blooms...makes me remember that surviving the cancer dance is about learning and re-learning to hold the opposites...that being a cancer dancer is not an either or dichotomy it's a both and kind of thing - you are strong and wise...you have known suffering and will know more...you live in hope and the circle of love surrounding you is way bigger than you may ever know.......glad you are harnessing all resources available to you... and just in case you need it, remember that i got a big ol' can o' whoop ass if your Docs or other providers get suddenly insensitive or stupid... though it sounds like you've got good medical support. when i went through 35 rounds of radiation w/cisplatin it was sort of weird - i didn't feel a thing for the first 3 or 4 weeks - it was sort of like a sci-fi thing - i actually wondered if i was being "punked"! i did get very tired after week 4, and sleep was such a powerful healer. i am sending huge buckets of love, strength and silliness (because one can NEVER have enough silliness) to you and pegs.......love, lisa

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  10. Dear Peggy and Dan, Just sent you a message from the heart and head and I'm sure I lost it!Phoned Debbie Starling and it appears that she is not that much less technologically disadvantaged then I am!!!(I have a feeling that the above is a very complex sentence, but hope you get my drift. So because it is near 7PM when friends and family around the globe hold you in the light, I will get off and try to send this! I love you guys. Judy C.

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  11. You are most certainly in our thoughts every minute and we pray and talk... and worry, but your words are oddly comforting-- for all their honesty and hope. Keep it up, and be sure to call if you need us or just want to talk. We love you tons. Can we bring some crustless tapioca pie? Sound good, heh?

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  12. The Journey by Mary Oliver
    One day you finally knew
    what you had to do, and began,
    though the voices around you
    kept shouting
    their bad advise-
    though the whole house
    began to tremble
    and you felt the old tug
    at your ankles.
    "Mend my life!"
    each voice cried.
    But you didn't stop.
    You knew what you had to do,
    though the wind pried
    with its stiff fingers
    at the very foundations,
    though their melancholy
    was terrible.
    It was already late
    enough, and a wild night,
    and the road full of fallen
    branches and stones.
    But little by little,
    as you left their voices behind,
    the stars began to burn
    through the sheets of clouds,
    and there was a new voice
    which you slowly
    recognized as your own,
    that kept you company
    as you strode deeper and deeper
    into the world,
    determined to do
    the only thing you could do-
    determined to save
    the only life that you could save.
    *****************
    Dan,
    May God bless you as you start the journey of the next phase.
    May you grasp the healing energy of God, the universe and the power within as you prepare to trod the path many of us have and will take. We are here for you and cheering you on if but from a distance.
    Susan Casler

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  13. I was so glad to see you at the Music Hall Annual Meeting yesterday and was thrilled to hear you jamming. I have a few photos from yesterday to send. I'll use the e-mail.
    Lots of love to you both, Jen Lyons

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  14. Hi, Dan:

    It was great seeing and hearing you yesterday.

    Terry Manion

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  15. Wonderful to hear the cardinal's song in your words. I'd like to recommend a book called "Healthy Healing" by Dr. Linda Page. ISBN is 1-884334-92-X. It contains lots of good information on holistic nutritional support for cancer recovery. A great resource. Still sending Reiki your way! Much love, Nancy, Holly & Caiti

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  16. Hi There Dan,

    See the Jan. 20th posting for my hello! I have never visited a blog before and didn't understand how it works! I got it now. Be Hugged. Linda

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  17. Hi guys,

    Just thinkin' 'bout 'cha!

    Hugs!
    Donna

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  18. Dan and Peg,
    It's good to get the update from you and your very good team of docs. Know that everybody in this family is keeping up the vibe, sending our love and concern and hopes your way. Spring is coming, Annea is working hard to become a bigger girl (with Jenny continuously serving up the milk) and you are doing all you can to prepare for the next phase of this experience. We can't ask for more. Take care--hugs and kisses--Nancy and Dan

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  19. Hi Dan and Peggy,
    Thanks for this blog. I feel the power of the 7:00 vibes. We must believe in this positive energy.
    Feel the hugs!
    love,
    Deb

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  20. Hi Dan and Peggy,

    I'm setting my iphone to go off at 7:00 p.m. so I can make sure not to miss the vibe sending time. I hope the clouds of love vibes lift you right up.

    Lots of love,
    Amy

    Also, Peg, I don't know if you've had a chance to speak to Con. She had been e-mailing you but maybe it was at an old e-mail address. I gave her "pegsong" the other night. She felt badly because she'd wanted you two to know that they've been thinking of you and following Dan's blog, and trying to be in contact. Anyway, in case you haven't talked to her yet, I wanted you to know.

    Much, much love!

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  21. Dan and Peggy,
    Much love, extra strength and courage, and many warm thoughts to you both, every day. Your music and your spirit have touched us (and touch our little one even at this early age), and we know that all the positive thoughts of this community will touch you and help you in your healing.

    And another dose of strength and positivity to the doctors that will carry you through this challenge.
    Love,
    Jim & Jenny & Annea Rose

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  22. Mr. Duggan, it is an interesting experience being able to follow your daily updates. Thanks for involving us all in this way! I live in Huron, NY and have been to one of your great barn concerts.

    I shared this blog site with my aunt from Wolcott and she wonders which "brother" you have as an oncologist (not sure which type) in Clifton Springs, Brian or Bruce?

    All the best!

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