New Day

Well I thought I'd use a different font today to remind you that it's me and not Dan posting...yet!  We found out more about the condition of his jaw from the surgeon this morning.  Turns out, his jawbone was actually fractured.  No wonder he was in so much pain?!  There was an infection in part of the jaw but they took out that section and had two good solid parts to which they could connect the new piece, kind of like legos.  Today and tonight will be the worst of the pain and swelling but they gave him a pump so he can press it when the pain is too bad.  They have him up sitting in a chair now and he took a couple steps, keeping weight off the defibularized leg.  Jamie Savage said now his voice will be fibulous!  Since he has the trach tube in he can't talk, but he's scribbling up a storm. I try to answer their questions for him but he'll have none of it.  So we need not worry about Mr. Duggan losing his personality during this exercise!

Good news!  Dan is through surgery and it went very well.  The surgeons began at about 8:00 AM and finished at just about 4:00 PM.  Both the head and neck surgeon and the plastic surgeon came out to talk to me afterward and they gave me two pieces of good news.  First off, they did not need to split his lower lip and chin.  Secondly, they were able to use blood vessels directly below his jaw on the right side.  There was the possibility of them needing to go to the other side of his neck.  So there are two places where they drew in pen but did not have to cut.  Hallelujah!  They did install a trach tube due to the swelling of his throat.  He woke up and immediately tried to start talking!  No, not Dan!  The other good thing is they did not need to use a skin graft on his leg.  He has more pain there than anywhere else, but they are doing their best to manage it.  The ICU nurse is wonderful, competent and sweet.  Her name is Ping.  Dan's already buttering up the nurses even though he can't talk!  We're both incredibly grateful to each of you and all of you for your prayers and good wishes.  We know we are never alone.

Here We Go !!

   Well here we go, hopefully we have dotted all the I’s and crossed the T’s to get ready for this surgery. This week we got to speak in depth with both the ENT surgeon {Dr. John Coniglio }, and the Plastic Surgeon { Dr Vega } about the operation and how everything will work . Both crews took plenty of time to answer our questions and it seems like everything is in place. Both crews will work simultaneously and it looks like the surgery should take around 8 hours. We have the first surgery spot of the day on Monday, {7.30 AM } and will need to be at the hospital around 6.00 AM, so put that good vibe out in the morning !  

     This week Peg and I have been working hard to try to finish up the recording part of a new CD we have been working on. I am not sure how long it will be before I am able to sing & play again so there has been a bit of a sense of urgency. One of the songs we have been working on is a song I wrote about my cancer experience; “You Are What You Dream”. This song has taken on a whole new relevance to me going into the surgery. I put together a mix and have put it up on Box .net so you can listen or even download the song if you would like. Here is the link.

https://www.box.com/s/qilh9wzc10k0a3xfihgt

    Thanks again for all your kind words and support, I can’t tell you how much it means to Peggy and I. Peg will try to post to the blog on Monday night after the surgery, and I will try to post a little while I am in the hospital next week. Here’s to strong hearts, talented doctors, a successful day in the OR, and a swift recovery !    

Osteoradionecrosis

   It has been quite a while since I have made an entry to the blog, and that is a really good thing. Over the last few years I have had several PT scans all showing some normal activity but nothing detecting any return of the cancer at the base of my tongue. But a subsequent issue has come up due to the cancer treatments. Osteoradionecrosis is a condition in which there is a significant weakening of bone structure due to high levels of radiation. This has been an ongoing problem but reached a critical point a few weeks ago.
       In May of 2012 an impacted wisdom tooth had to be removed and it was determined that antibiotics would take care of any of the infection. The tissue looked like it was healing OK but unfortunately the infection has remained in my bone for almost a year. Infections are nearly impossible to eradicate in highly irradiated tissue and bone structure. Over the course of last year, the infection would cause swelling and a great deal of pain and a round of antibiotics would calm the infection down but not get rid of it. This all reached a critical point a few weeks ago when there was another outbreak from the infection. A visit to my oncologist and a new X-ray showed a dramatic loss of bone structure in my jaw both from osteoradionecrosis and the infection. The diagnosis is stage three osteoradionecrosis.
         I was referred to Dr. John Coniglio in Rochester and he concurred that the situation has reach a critical stage and will be doing surgery on April 15th at Highland hospital in Rochester to try to improve the situation. The surgery is called a mandible resection, and they will take bone and tissue material from my left fibula and cut out the bad jaw tissue and bone from my jaw and replace them with the good healthy tissue and bone. The surgery is complex and will entail a 7-10 day hospital stay with 6 to 8 weeks recovery but the prognosis is good for a full recovery! The team of doctors perform this surgery 4 to 5 times a month and have really perfected it. Unfortunately if I wait any longer the infection could cause a life threatening situation. This surgery is the best chance I have to leading a healthy life with the post radiation jaw I now have!
          One thing that is a little alarming is how many head and neck cancer survivors are developing osteoradionecrosis ; somewhere around 15%. Dr. Coniglio mentioned that this is because many cancer patients choose not to have surgery to remove cancerous lymph nodes and therefore the radiation levels are higher to take care of everything. In my case I did have surgery but the primary site was the base of my tongue which is a difficult area to remove a tumor so higher radiation levels were required.
         We are keeping a positive outlook about the surgery and will be really happy when it is over. Peggy will post an entry after the surgery to let you know how things are progressing. Since I will have a trach tube for breathing for the first week, it will be impossible to talk with anyone but I will be able to send notes. As always I so appreciate all the positive thoughts that are coming our way from so many of you. It means more than you know. Here’s to a bright Spring !!

7/08/10 Its Summer !

Well I have certainly been very bad at keeping up with the blog this late spring and have seen several of you at concerts who have certainly let me know ! I do apologize and will do my best to keep the blog rolling thru the summer ! It has been a busy few months. In early June I had a Pet scan and all is clear right now on the western front, and that is wonderful news! The radiation oncologist feels like we are in really good shape but will still continue to monitor me every six months, and at that point decisions will be made as to weather Pet scans are needed. The guidelines keep changing and a lot of that is the work of the insurance companies. I have been running every few days and although there is still some nerve issues with my legs it is a wonderful thing. My throat continues to be an ongoing adventure! During times of high humidity, things swell up and eating becomes a bit more difficult. I am still on a rather odd diet but the good news is that I can eat a lot of different things, fruit and greens are still out but I have become quite fond of soft pies!! I don’t know how much more will come back but I am so thankful as I think back to last summer and how tough things were.

We had a wonderful concert and Dulcimer weekend here at the farm in the middle of June, a great visit and concert for Joe and Carol Brusheck at the Ndakinna Education Center and Peggy and I recently finished up a great week of concerts in Western NY and are headed to great camp Sagamore for a week of intergenerational camp. Also Peggy and I just received our new CD “Grandsongs”, which is a disc of a lot of the songs we do with grandparents and kids. We have lots of traveling, concerts and workshops coming our way this summer. Every summer someone says “July 4th summers over”, but it feels like its just kicking into high gear. I thought some of you might get a kick out of the theater marquee that we found waiting for us when we played at the Indian Lake theater in June !

After all this time to digest the feeling of going thru cancer and treatments, I have finally started to be able to write a song or two about what I am and have been feeling. I have included the latest below “You are what you Dream”, Peg and I hope to be performing this later this summer. Also Peggy has a wonderful new song about the music pulling us thru all of this. And of coarse we continue to be ever thankful for this wonderful community of friends that have showed so much love and support during this amazing journey. We hope to see many of you at performances this summer and I promise to much better at keeping this blog up to date. Keep those positive thoughts coming for so many people we all know that continue to struggle with Cancer, our thoughts and prayers can go a long way !!


You Are What You Dream

Dan Duggan c Esperance Music BMI

Hold on to your Faith
Hold on to your Dreams
Hold on to your strength and your will to Succeed
The days may seem long
And the nights may seem endlessly cold
When hopes promise fade, as tough as it seems
Hold on to your dreams

We travel this road
We walk hand and hand with the ones that we love
The pavement seems smooth
And sometime the push it turns onto shove

Chorus

One day at a time
You’re biting off more than what you can chew
With the care of our friends
Each day you can sense how hope is renewed

Chorus

One Step at a time
Thru good days and bad, oh you’ll make it thru
Your seeing things clear
Your positive thoughts, they all can come true

Chorus

Hopes promise won’t fade
As tough as it seems you are what you dream

4/24/10 A Big Anniversary

Today is a quite a special day. It is the one year anniversary of finishing treatments at Clifton Spring Cancer center. And although the effects of the radiation and chemo has lingered, the actual day of finishing treatments was a significant milestone. Thru many of the conversations I have had in the last few months with other head and neck cancer patients, my mind has wandered a lot to thoughts of last years struggles to finish up treatments. I find myself so thankful this Spring to be enjoying walking in the back field, mowing the lawn and all the other activities that Spring brings. But most of all I am so thankful to all of you who have been so supportive of Peggy and I during this ongoing journey. Without your love and support I can’t imagine how I could have gotten thru all of the radiation and chemotherapy treatments. Today I still have some eating issues, throat pain and some nerve issues but I hold my head high and yes we have gotten thru this year together! Later in the day I will plant this beautiful saucer magnolia to mark this one year anniversary. Each year about this time it will flower and remind me of the hope that this anniversary brings. The Oak tree we planted this day last year is strong and will be leafing out soon. My recovery is continuing well and the ENT feels hopeful that things will continue to improve. I have a PT scan scheduled for May 10th and that will help to tell us a little more. This afternoon I leave for a concert tonight at Tannery Pond community center in North Creek with Dan Berggren and Peggy and then a week with the Susquehanna string band. Every day I count my blessings and find myself to be as lucky as a man can be. Thank you again for all the thoughts and support that have come our way, it means more than I can ever tell you. I will continue to report in as my recovery continues. And yes today we celebrate yet another milestone, and find we have so much to be thankful for !

4/13/10 Good Dog Zeus

March was a wonderful month, with music trips to the Adirondacks, Maryland, North Carolina and the Hudson Valley. It has also been a month of looking back and putting perspective on how well my recovery from cancer treatments has come along. I had the six month checkup with my radiation oncologist and that went well. He feels that things are improving as well as we can expect.For some reason there are new guide lines on receiving PT scans and after much dialogue it was decided that I will have a PT scan in May. It really is the only gauge that can tell if cancer has returned to my throat and neck. I am thankful that the folks at Clifton Springs are willing to help facilitate all of that. It was wonderful to return to the radiation center and get to see everyone who was so helpful last spring when I was doing treatments everyday. I really can’t say enough about all the wonderful people at Clifton Springs and the fantastic personable, professional care I received there. After all it is the people in the long run that make the difference !!

I have been continuing to see progress every day with eating and the residual nerve damage left from chemotherapy, radiation and surgery. The eating changes are slow and subtle but are there none the less. I have been seeing a wonderful acupuncture therapist in Oswego and she has been incredibly generous to me. I can see real changes in the nerve issues in my hands and legs and although the changes are small and time consuming, they are happening and that is wonderful. As the weather is warming up I am slowly getting back to running and it feels great. That too is a slow process but I can see and feel steady improvements each time I am out !!

On a sad note, we had to put our border collie/lab mix dog “Zeus” down last week. He was a loyal friend and a sweet, loving and joyful presence for Peggy and I for almost nine years. We got Zeus when he was just about six years old and he lived to be over fourteen, which for his breed is really good. He had struggled with spine and hip issues for the last six month and had a seizure while at the kennel when we were in North Carolina. He did survive that ordeal but two weeks later had another seizure and this time was pretty well paralyzed. He let us know when it was time and we will miss him terribly. Peggy and I are having a conversation with a wonderful border collie rescue farm in Morris NY. and if the right dog comes along we might be tempted. I can’t say enough about what a wonderful presence Zeus was in our life, especially a grounding sense of normalcy when I was going thru cancer treatments and this recovery. He will always hold a special place in our heart.

Later this month I look forward to travels to Bennington VT. and the southern tier of NY state with the Susquehanna String Band. April is here and the flowers are blooming, the birds are singing every morning and the days are truly getting longer. To all of you who have been so supportive during this last year I thank you from the bottom of my heart. This recovery continues and I can fell my strength slowly coming back, but I could not do it with out your help and support. Please keep several folks who have found this blog and are just starting their journey with head and neck cancer in your thoughts and prayers. I will continue to keep you up to date on how things are going and I look forward to seeing you later this spring and summer. Keep the wonderful promise of spring in your heart !