Tuesday, January 27, 2009

Jan 27/2009 Confusion ??

This journey is certainly quite a roller coaster, one minute you feel that you are on board with everything going on and the next you are riddled with confusion and depression that can just about paralyze you. Its so hard to have confidence that you are making all the right decisions.

On Sunday night we received a call from the oncologist telling us the results of the PET scan. There is “activity” in the upper neck area near the tonsils. The oncologist feels that this is a good report and shows us that this is still relatively localized and can increase our chances to knock this thing out. On Monday we went back to the ENT again who looked with a scope at the area that was highlighted from the PET scan and did not see any irregularities, but that does not mean it is not there. He is interpreting the scan as telling us that the cancer is in my right tonsil and his approach is to surgically remove the right tonsil and do what is called a radical dissection. This surgical procedure takes out most of the lymph nodes on the right side of the neck and also removes some of the main muscles in the neck to get to the nodes. The procedure can have difficult side effects if the nerves are pinched at all. It controls the motion of the arm and shoulder. We spoke more about the possibility of doing a partial dissection, just removing some of the lymph nodes and leaving the main muscle alone. This approach sounds reasonable and seems to address some of my concerns. So we are tentatively set up for surgery at the hospital in Newark NY next Wednesday Feb 4th, with a 3 to 4 day hospital stay. After recovery from the surgeries {4 to 5 weeks} we would then proceed with the original plan for 5 to 6 weeks of radiation and chemo, but we would most likely be trying to knock out just the residual cancer, not the main source. In the meantime I am trying to set up a second opinion from another ENT later this week. Right now time is of the essence and we need to proceed with whatever our plan is. I still have a bit of reservation about doing the dissection, and have received a few notes from folks who have opted out of the dissection and have done longer radiation and chemo treatments. This also can have considerable side effects. I am trying to find out if this is an option with our oncologist.

This is all incredibly confusing to me and I am doing the best I can to sort all of this out. If any of you have had any experience with this I would love to hear your comments. In the meantime I am doing my best to keep my spirits up and really appreciate all of your thoughts and notes. I stop and close my eyes at 7:00 pm each night and feel of your vibes. Right now they are especially appreciated!


  1. Dan,
    This is not what any of us wanted to hear, especially you.
    I am going to call some of my ENT contacts at Albany Medical to get some names of the foremost folks in this field.
    You really may want to consider a consult at Sloan Kettering or similar facility.
    I am quite afraid you may not be happy with the results of a radical dissection in terms of disfigurement and limitations, however balancing that with life preservation is an extremely difficult choice.
    I will call you as soon as I get any information. In the meantime we all will keep playing and praying.
    Much love to both of you,
    Sue C.

  2. Dan, Oh $#!* - not what I was hoping you would be hearing :-( Deep, deep breaths, my friend! I also feel you should be looking to other input. Put the resource concern aside and lets follow the leads to the best of the best in this area. I will do some searchs and call you with what I find.
    Hugs and lots of love to you both -

  3. Hi Dan,
    I am also asking people I know who might have some information about this. I agree with Elise--you are too valuable to get any less than the best treatment available. Hang in there. We are all rooting for you.
    My love to you and Peggy.

  4. Hi, Dan,
    As a cancer survivor, I can so empathize with your sense of confusion. Cancer doesn't come with instructions--even with the most talented and experienced docs on board, which you certainly should seek out. Gather all the advice, listen with your ears and your heart, and follow your instincts. That will lead you to the right decision, my brave friend. You are in my prayers.
    Sally C.

  5. Hi Dan,
    Our hearts go out to you and to Peggy. I am also a cancer survivor. Having heard I had a poor prognosis, and being here to lift up prayer on your behalf 12 years later is a testament to God's grace. The doctors you trust and the place you go matters! There are a lot of great cancer centers in your area. I went to doctors all over the eastern seaboard to figure out what to do, and ended up 10 miles from my door for treatment. But I had the advice from several doctors and felt that my own wishes were honored. I have been wishing I were closer and could bring you guys your favorite dinner and pies....frequently! I just got the news yesterday before work, and realize you had your surgery on my birthday. You can beat this! I know! ABP...you do it much better than I ever did. If you have trouble being positive, we'll do it for you. AT LEAST every day at 7pm. Oh, Nathaniel (13), says hi. Kathy

  6. Hey Dan - you totally described my early experience with my diagnosis in your blog. It is such a confusing and chaotic time. I know it is hard to make decisions - we have no way of imagining what we are agreeing to until we have already been through it. It's really tough.

    As you asked for our opinions, I am going to recommend a second opinion with my oncologist here in Syracuse. I know that you probably won't want to come all the way up here for treatment, but he will definitely be able to give you good advice on treatment. His name is Joseph Navone, and he is with Hematology/Oncology of Central New York. Your insurance ought to approve the referral, since he's a local practitioner. He was my second opinion back when I was diagnosed last year, because my insurance would not approve any second opinions at a regional cancer center. But, that worked out for me, because I had so much more confidence in him than in my original oncologist that I switched, and I got excellent care.

    There are 2 other things I wanted to say to you before I sign off.

    1. Count me in on the 7 o'clock vibe sessions. I will definitely be joining in on that. You are in my thoughts throughout every day since I heard about your diagnosis.

    2. I know why you would not want the total dissection. I can't imagine a world in which you are not making beautiful music, and yet, if it would save your life... but if your prognosis would be the same with a partial dissection and more extensive non-surgical treatments. Such a difficult decision to get adequately educated about in such a short period of time. Which is why I recommend my oncologist for your second opinion. I hope you will consider him.

    You and Peggy are in my thoughts and prayers. I was so happy to see you on Sunday. I hope that you will call on me if there is anything that I can do for either of you. Anything at all.

    Love, Maria

  7. Dan and Peggy,

    My thoughts, prayers and warm wishes are with you both. Follow your heart, it won't steer you wrong.

    I've changed the boys feeding time to 7:00pm, so while it may be cold I will be sending warm and furry vibes from a special place.
    Nancy B (as in Brown)

  8. Hi Danny,

    Not too familiar with even making a comment, but see that it's easy. We're all humming with good wishes all the time, even at 7PM, and my advice mirrors folks who suggest Sloan Kettering or what about Roswell-Park in Buffalo? Lots of bigger teaching type hospitals are right up to date and see and work with lots of people with lots of diagnoses...Love and hugs, Nancy

  9. Dan and Peggy,
    My heart - and my prayers - are with you, not just at 7 p.m. but all day every day. You are both beloved special people in my life. I do not have the expertise that some of those posting have in where to go and what decisions to make, so I will add in my prayers that their research among their own resources will bring the solution you need.

    As others have said, you are describing familiar emotions, a roller-coaster of thanksfulness for the gift of life and companions, depression, often deep and difficult to manage, and joy at every small piece of information that brings hope.

    Ask for divine guidance, ask for dreams for illumination and ask for dreams for healing - and for direction to help you make decisions. Take the images you receive and work with them in the most creative way possible.

    You are writing a blog - that is already part of your healing process even in these difficult times of deciding how to proceed next.

    My blessings on who you are for all of us; my prayers for your complete healing and for guidance in making the decision that will bring you to that healing and at the same time leave you with the full ability to realize all your dreams and gifts that you have been blessed with already.

    -Wanda and Ron

    In sharing in your blog you are also sharing specific intentions for us to add to that 7:00 moment of blessing.

  10. oh dan..sigh...i wish i had experience and connections. and answers. you both are in our thoughts as you struggle forward with this. of course, if you decide to come to roswell, my house is open to you and peggy for as long as you need it. its very hard to be in a place where you have to make decisions that are far out of your area of knowledge. its hard to know in that case what is the right thing to do. but it seems like you've got some good suggestions from the people above. and you have all of our love and strength coming your way. love stef, (and val)

  11. Hi, Dan

    Here's the link for the Mentoring Program that originates at Hemotology/Oncology CNY. It's open to anyone, not just those treated through that practice: www.unique-connections.org

    The program will match you with a cancer survivor with the same or similar diagnosis, who can be another point of contact and source of support.

    Love and prayers,

  12. Hi Dan,
    Just want to let you and Peggy know that I am following along with you both on this most difficult journey of yours....I send you my love and hope and strength and patience and courage, not only at 7pm each evening, but also "24/7" as they say...
    Big Hugs,
    (Jessica Perl)

  13. Dan, Cindy and I send you and Peggy our love and caring thoughts. We know what you are going through, as far as making a decision and wanting a guarantee that it is the correct one. Your approach of considering the options and getting a second and third opinion are obviously justified.

    Whatever decision you make will be the right one. Know that you are in our thoughts and prayers.


    Jerry & Cindy Sharfstein