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 !!!

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!

Friday, January 23, 2009

Jan 23rd, 2009 National Pie Day

Thursday I spent the day at Ide imaging in Rochester having a Pet scan. They give you a radioactive injection, then you need to sit quietly for nearly an hour so the material will distribute evenly throughout the body. For the scan you lie perfectly still {on your back} for an hour as you are slowly moved in and out of the machine. This was quite an accomplishment for me, in fact I don’t know if Peggy has ever seen lie that still for so long! We should have the results sometime the beginning of next week, and once again hopefully have another piece of the puzzle.

We received a wonderful email from our friend Debbie Starling in Indian Lake with a great idea. “Here's the deal. Since everyone is sending good wishes, prayers, happy vibes, healing thoughts, etc. for Dan’s healing and strength to you both, it might be more powerful if we did it at the same time. We have been sending vibes at 7:00 each night. The more the merrier. This is like a group phone cocktail to a higher power. We started right away and the word is spreading. I don't really know how many are doing it but you might mention it to others that would like to do something in support. We will continue and now that you are aware of it, I bet you'll feel it”.
Sounds like a great idea, strength in numbers!

Many of you have mentioned that it has been hard to leave comments. I have changed the settings to make that easier, so please try again, your wonderful healing thoughts and notes really do make a big difference.

Finally, for those of you who are not aware of it, today is National Pie Day and as you know we are quite fond of pie. In honor of the holiday find a quiet moment to sit down and enjoy a warm piece of fruit pie al-a-mode, “Its pretty good for you”.

Tuesday, January 20, 2009

Jan 20th, 2009

Peggy and I arrived home to cold and snowy Red Creek on Sunday night and although the sun and warmth of Florida seem like a distant dream, it is good to be home and to sleep in our own bed. It was a wonderful trip and allowed us some time to put all of this in perspective before jumping back in.

On Monday we went to see an ear, nose and throat specialist in Canandaiqua. Dr. Simmons was really pleasant and scoped my nose and nasal passages and the upper part of my throat. He also did a through exam of my tonsils,{yes I still have them!} and the back part of my throat and tongue. He could not find any irregularities that jumped out at him, and unfortunately this type of cancer {squammous cell}, can be hard to find and the main site can be really small. Our next step will be a pet scan of my head, neck and chest. These are similar to CT scans but also work with a glucose base that can detect even small groups of cancer cells quite easily. The pet scan will be scheduled for later this week or next Monday. The ENT feels that if the pet scan is clear than we most likely will be able to start treatment without additional surgeries. Our oncologist may want to explore some more at that point. If cancer cells are found on my tonsils or the back of my throat, there is a good chance that more lymph nodes could be seeded and another operation of my neck to remove more nodes could be necessary. So there are still are a lot of questions but it’s good to be in motion and in the hunt for the main source of the cancer cells. Slowly the picture will become a little clearer.

On this inauguration day, as we celebrate hope and a wonderful new beginning, I take that feeling of hope with me and will let it become the theme for this year. If there is one thing I am learning from all of this it is to live in the moment, live for this day and this day, Jan 20,2009 is filled with hope! I thank you all so much for your warm and thoughtful comments and notes, they are a constant source of comfort and strength. Here’s to new beginnings.

Tuesday, January 13, 2009


Hi everyone, if you have found this site you already know about my head and neck cancer diagnosis. I thank all of you for your wonderful notes and phone calls filled with loving thoughts and encouragement. This will be a long and difficult journey with many twists and turns. As we proceed from diagnosis through more surgery and treatment. I think that this blog will be the best way for me to keep things up to date. I’ll write as often as I feel up to it and I look forward to hearing from you. My Dad, Bill Duggan, has always been the most positive influence in my life and I have carried his positive attitude with me. His favorite saying was ABP, always be positive, and in his memory, armed with that positive attitude, the great strength of friends and family and the never ending support of my wonderful wife Peggy, I embark on this most challenging chapter of my life.

Jan 13th, 2009

As I write this Peg and I are in Punta Gorda Florida drinking up the sun and trying to put all of this in perspective.

How did all this start ??? I was driving home from a gig in October, when I scratched my neck and noticed an enlarged lymph node on the upper right hand side of my neck. After a visit to my good friend and Adirondack GP Tony Waickman, I was told to keep an eye on it and if it did not go down in about two weeks I should have it looked at. At the recommendation of our GP at home I met with Dr.Almehari in Newark, NY on Nov. 24 and he seemed concerned, so on the same day a CT was done of my neck. The next morning around 7:15 am. his office called and told me they suspected I had either a lymphoma or squamous cell carcinoma and strongly suggested that I come in the next morning to have surgery to remove and biopsy the lymph node. (The sensitivity of some surgeons leaves a lot to be desired !!) Because of the Thanksgiving holiday and our busy holiday performance schedule we settled on Dec. 17th to have the surgery, in turn I agreed to have 4 more CT scans (head, chest, abdomen and pelvis) done on the day after Thanksgiving, Nov 28th. All of those CT scans were clear. The surgery went well and after a week on the couch and lots of Vicodin, Peg and I performed on Christmas Eve at our Unitarian Church in Syracuse. On Dec 29th we met with our surgeon and found out that the biopsy was positive for stage 3 metastatic squamous cell cancer and the lymph node was only the secondary location. The meeting was surreal almost seemed like we would soon awake from a bad dream. No compassion or sensitivity from the doctor, just a matter of fact, you have stage 3 cancer and we’ll find you an oncologist. Good luck. In my conversations with many of you who have had cancer it seems like the surgeons tend to be the least sensitive and not so great with the bedside manner!!

The next day, Dec 30th we met with our new oncologist Dr. Bruce Yirinec at the Clifton Springs Cancer clinic near Geneva, NY. He spent over an hour and a half with us and he is truly wonderful. He made it clear that this will not be an easy road, but with surgery, radiation and chemotherapy we have a decent chance of knocking this out. But the first order of business is finding the original site of the cancer, most likely somewhere in the right side of my head, sinuses, throat etc. As scared and confused as we feel about this both Peggy and I have great confidence with Dr. Yirinec and feel that he has the knowledge and compassion to lead us thru this maze!

With the good doctor’s blessing on Jan 4th Peg and I flew down to Punta Gorda Florida for a two week trip that was originally set up for us to take Peg’s parents. The morning we were all to leave, Charlie { Peg’s Dad } had an episode with a bad hernia and was taken to Auburn hospital where two days later surgery was done for the third time in three years on his hernia. Knowing he was in good hands and having music gigs in Florida we came down ourselves. Sometimes things work out in strange ways!!

We fly home on Jan. 18th and on Jan.19th I meet with an ear, nose and throat specialist who will do an examination of my nasal cavities. Later in the hospital, under general anesthesia, there will be an endoscope exam of my throat passages and bronchial area and lungs. All of this in hope that they can find the primary cancer site. If a site is found, hopefully surgery can be done to remove the cancer and then there will be a five to six week regimen of radiation and chemotherapy. If the primary site is not found then we do the radiation and chemotherapy.

Right now the hardest thing seems to be the uncertainty, not knowing where this thing is and how much it has spread. In the quiet moments I pray for strength and most of all for patience. The music seems to have taken on a greater depth and performances with Peg and the Susquehanna String Band during the last few weeks have given me a great lift. A few more days in Florida then we are on our way home to jump into the fire. I have been so thankful for this quiet time in lovely weather to start to deal with all of this. I’ll try to keep this blog up to date as we proceed, so please stop back often and let me know your thoughts. Thanks again for the all the wonderful thoughts, concerns, and prayers. They lift me up and let me know that I am not fighting this thing alone.