Thursday, December 17, 2009

12/16/09 The Holiday Season


It’s hard to believe that the Holiday season is upon yet again {yes that is a jpg of our Christmas tree this year!}. Thinking back on issues from last year at this time I find myself extremely thankful for this upcoming holiday. Peggy and I have done some wonderful seasonal concerts to date. Last Friday night we had a thank you concert at the Presbyterian church in Red Creek, where in April there was a spaghetti dinner fund raiser for us. It was a wonderful night and we were both thrilled to be able to give back just a little bit to so many who have been so generous to us. This weekend we do our annual pilgrimage to Lake Placid for our Adirondack Christmas concert at the Center for the Arts with good friends Roy Hurd and Frank Orsini. Peggy and I will also be doing the music for the Christmas eve service at the First UU church in Syracuse. Lake effect snow is in the air, it must be Christmas time !!

On Monday I had my last visit with the chemotherapy oncologist at Clifton Springs. It was a great visit to the cancer center and I was surrounded with a flood of emotions returning to where I had been a daily visitor for nearly two months this spring. I spent an hour playing music on Hammered Dulcimer for both the chemotherapy lab and the radiation lab. It was wonderful to visit with the nurses and the doctors and have a chance to see them feeling a little more like my usual self. I received a clean bill of health from the Chemo oncologist and hopeful thoughts that some of the neurological issues that I have been dealing with will slowly begin to subside with time. With the passing of time, I have been able to fully realize what a special facility the cancer center at Clifton Springs really is. The staff there has always treated us like family and the positive, helpful environment was a big part of my successful treatment recovery. I can’t thank everyone there enough. I also have been seeing a wonderful acupuncturist, Caroline Robinson in Oswego NY. and she has been really helpful with the neurological issues that have been a problem, especially with my right hand and legs. I continue to slowly put on a few pounds and eating what I can, Thanksgiving dinner was a soft food bonanza to say the least!


As we close this year and look forward to a new year I wish for all of you good health, happiness and a wealth of positive energy to come your way. I hope to be able to see many of you this winter and spring at concerts and workshops. Peggy and I will be traveling to Florida this January and to North Carolina in March for concerts and workshops. Closer to home, the Susquehanna String Band will be performing Jan 8th at the town hall opera house in Bainbridge NY, and Jamcrackers { Dan Berggren , Peggy and myself}, will be performing at the Music hall in Oswego NY on Jan.9th. We are so blessed to have an abundance of good friends and increasingly good health as the year comes to a close. To all of you who have been so thoughtful over the last several months, thank you again from the bottom of my heart, I really could not have done this journey without you!! Have a wonderful Holiday season and I will continue to update the blog as my recovery continues and we enter 2010. Peggy put it best in her song “Giving Thanks”

“In this season of joy and thanksgiving
As I look at the live I am living
I count up the blessing of old friends and new
And I am thankful for you, I give thanks for you”

May we all count our blessings this Holiday season.

Monday, November 16, 2009

11/15/09 Back on Track !!


It has been a while since I have posted anything and for that I greatly apologize. Peggy and I have been really busy with music and traveling. During October we got to do concerts all over the state including a wonderful concert at Blueseed studios in Saranac Lake, Mt Music Weekend at great camp Sagamore, concerts with the Susquehanna String Band at the Unitarian Church in Cortland and Syracuse and a wonderful concert at the Quaker meeting house in Orchard Park to name a few. Last week Dan Berggren and I performed in Rochester with Carl Heilman. Carl has a new multi media program titled “ I am the Adirondacks”, and Peggy, Dan, and I worked with a wonderful composer and scorer from Rochester Casie Filiachi to do all the music. It really is a fantastic piece and we will have DVD’s available for sale around the second week of December. I continue to do everything I can to keep the healing process moving forward. Eating is still a bit of a challenge but is coming a long way!! I can eat a variety of softer foods and am doing my best to try to put on some more weight. I am seeing a wonderful acupuncturist in Oswego to try to help with some of the Neurological issues that have come up, especially with my right hand. It really seems to be helping, but as she explained to me it takes a long time to start seeing significant change in that area. My strength and stamina are slowly improving and I still need to get plenty of rest to be able to keep up. Last week I had a visit with the ENT surgeon {I see him now every two months}, and he was really happy with the progress that I am making. He showed me where the cancer actually was; it was deep in my mouth at the lower base of the tongue and much closer to my epiglottis than I had thought earlier. He feels really good about the prognosis for the future and is pleased with the healing to date of my neck both inside and out! He feels that with proper screening we should be able to keep on top of all of this.

Someone said to me the other day, congratulations on being a Cancer survivor. It was a wonderful thing to hear and at times it really does not even seem possible. It is hard to believe that all of this started to come to light just about a year ago I really want to do everything I can to help out those who find themselves facing this type of Cancer. I have contacted the American Cancer Society of Central NY and hope to become a mentor for cancer patients dealing with head and neck cancer. I also would hope that the blog can help out those who are searching for answers about this particular type of Cancer. In my travels I am meeting more and more people who have had head and neck cancers or know someone who has and it is my hope that more people will become aware of these types of Cancer. I recently finished an article about my Cancer experience for Dulcimer Player News that will be coming out in the Winter issue, and last week Tom, Henry, Peggy and I recorded “For the Love of Friends", to be included with the CD the magazine offers. I also hope to put the new version of the song on line soon for all of you to down load, it really come out wonderfully.

With each passing day I feel more and more fortunate to be where I am right now. There are still issues to deal with but I am so blessed to have this army of friends and supporters that have been such a huge part of my recovery. I try to stop each day that I can at 7:00 and send a vibe to all of you and to those I know who are battling different types of Cancer and Leukemia. The 7:00 vibe has been such a wonderful and powerful thing it would be great if we could keep it going each night for those who are struggling with their Cancer journey. I will try to be much better at keeping you all updated in regards to my continued recovery. I look forward to seeing you at concerts and workshops this late Fall and Winter and once again a heart felt thank you for your ongoing support of Peggy and I,it means the world to us. This year at Thanksgiving we really do have a lot to be thankful for.

.

Monday, September 28, 2009

9/28/09 Cancer Free !!


Well today is a day that has been a long time coming. After 10 months, 3 surgeries, 35 radiation treatments, several chemo-therapy treatments, six and a half months with a peg tube,and many long difficult days and nights, for the moment I can actually tell you that I am cancer free. Today’s pet scan was completely clear and left no doubt about it. And although there are no promises about tomorrow, Peggy and I are absolutely thrilled to be able to pass on the good news. I will need to see the radiation oncologist every six months for a year or two, and also have scans twice a year but with all of your help and support we have come a long way!! To date this has been quite a journey and I have been so humbled and touched by the love and support shown by this community of friends. Realistically there are still a lot of issues to overcome from the treatments and this scan today is far from a cure, but with each landmark that passes we will inch closer and closer to that goal. I am eating better and even though it is still soft food, it is a great thing to be able to support myself without the help of the peg tube. Also there are still issues with nerve damage to my right hand but over time I hope that will get better. But today is a day to celebrate, lift up a glass and here’s to all of you for believing that we could actually see this day, here’s to the miracle of each and every day and living it to the fullest, and most importantly here’s to good friends that have helped to see us thru to this point in our recovery. And let’s not forget here’s to the healing power of music and the wonderful role it plays in all of our life’s. And here's to my wonderful wife Peggy who continues to be my rock through all of this. I also need to thank the wonderful doctors and staff at Clifton Springs hospital and cancer clinic who have been amazing and have treated Peggy and I as if we were family.

I can’t thank all of you enough for your never ending support during this time. It really has and continues to mean the world to Peggy and myself. I will continue to update the blog every week or so and keep everyone posted as my recovery continues. In the meantime I look forward to seeing many of you at performances this fall and as always, I’ll look for you at 7:00.

Thursday, September 17, 2009

09/17/09 Tubeless in Red Creek !!


It has been a really good week!! On Monday we had a visit with the chemotherapy oncologist and lab work done at the hospital. Both went really well, all the blood counts were normal and there was nothing out of the ordinary. I had a goal to weigh 145 lbs for this particular visit and when they weighed me in I was 145 on the nose! That was great. But the best part of the day was having the peg tube removed. I realized that I had the peg tube for over six and a half months and it really was a life safer during and right after treatment. I really think that things would have been much more difficult without it. But as grateful as I am for the role it played during radiation and chemo therapy I am so thankful and happy to have it no longer be around. After a few days my stomach is feeling good and I hope that once I get back a little more weight I can put on the old running shoes and get back at it! Even though what I can eat is still quite limited, I am thrilled that now it is all coming from eating, and that is a major step in this recovery. I am scheduled for a pet scan on Monday morning Sept.28th and that will hopefully tell us a lot more about what is happening with my mouth and neck. I am hopeful for the best and I would gratefully ask for some good vibes on the 28th.

Tomorrow night is the Susquehanna String Band concert here at our farm with a weekend Hammered Dulcimer master class to follow Saturday and Sunday. Next week we are up in Potsdam at Hosmer auditorium on Monday night and doing outreach programs to north country schools the rest of the week. I can’t tell you how wonderful it is to be able to be out performing and traveling again. It really seems miraculous and now things are starting to feel a little more like they used to. I still get quite tired out but with each passing day the energy seems to be a little better. It really gives me such an appreciation for every day that we have. To all of you and your never ending support I am so very thankful and grateful ! Without you this journey would be much more difficult, that’s for sure. Enjoy all that fall has to offer and I’ll look for you at 7:00 !! By the way this post is number 50,which is really quite a milestone.

Thursday, September 10, 2009

09/09/09 A Sense of Accomplishment !


It’s hard to believe that fall is here, the school bus is running past our house first thing in the morning, the days are getting shorter and the nights are a bit cooler. The summer seems like a distant memory as our sights turn to autumn. But as I think back on this summer I can feel a great sense of accomplishment in all the performances and workshops that I was able to do. The concerts at the beginning of July were a bit of a stretch, but as the summer progressed I became more and more comfortable with performing and what I could and could not accomplish. Although at times things were really difficult and uncomfortable, I am so pleased that at least I have been able to get out and perform the bulk of my summer schedule. For that I am extremely thankful. And although there are still physical issues to work out, numbness in my hand and difficuty swallowing, I can honestly see some wonderful improvements. Now I can start to turn my sights on our September concerts, The ADK museum this weekend and the Dulcimer master class and concert with the Susquehanna String Band next weekend {Sept. 18-20} at our farm in Red Creek. It won’t be long now and we’ll be talking about the first frost!

I hope that next week will be a good one. On Monday I go to Clifton Springs for lab work and a visit with my chemotherapy oncologist. It has been two months since I have been to the hospital and I look forward to sharing my progress with them. After a long conversation with the radiation oncologist’s office last week, it is my hope that I will be able to have the peg tube removed on Monday. I have been able to gain a little weight and hold it with out having to use the peg tube for about the last two weeks. The radiation oncologist has approved having it taken out but I need to get clearance from the stomach doctor when I see them. I realized that I have had the peg tube for over six months and when I needed it the most this spring it really was a life safer. I can’t imagine how I could have gotten through the treatments without it. If I can have it removed it will be another major step in this recovery and a huge emotional boost as well. I am also scheduled for another petscan on Sept. 28th. The insurance company has approved it and I hope it will give us a little more direction than the scan did back in June.

As always I am so very moved by the wonderful response of everyone in this great community. All of your thoughts and prayers continue to help Peggy and I get through some of these long days during my recovery period. It has been so wonderful to see so many of you at performances this summer and I do look forward to seeing many of you this fall. Keep those vibes coming and if you think about it send a little extra vibe late Monday morning with the hopes of having the peg removed!! Have a wonderful week, take a few minutes to savor your accomplishments and as always I’ll look for you at 7:00.

Sunday, August 30, 2009

August 30, 2009 Inspiration !!


Sorry its been a little while since I have posted anything but it has been a wonderfully busy few weeks !! The intergenerational camp at Great Camp Sagamore went really well. It was a great group and wonderful way for Sagamore to finish Grands for the summer. Last week Peggy and I were in Maine. I went to Mt Desert Island and had a wonderful time with some good friends who live on Otter Cliffs road, the seas were wild from the tropical storm off shore and on Monday Henry took us out in his Lobster boat to check things out !! One of the highlights of the trip was getting back over to Little Cranberry Island and having a chance to see an old friend, Ashley Bryan. Ashley is a wonderful author, painter and storyteller who is a full time resident of Islesford. At 86 years young his creative juices are still flowing strong and his enthusiasm for life is contagious ! He showed us all the original art work for his new book that will be released later this year“All things bright and beautiful”. It was such an inspiration to spend some time with him and so great to find him in good health and still loving every minute of every day !! A lesson that I have learned myself. Also while on the island I got to have some wonderful food,{lots of lobster and sea food !} thanks so much Gail. I spent the second half of the week at Meadowlark music camp helping Peggy with her classes and doing a concert set together. It was wonderful to see everyone who had been so incredibly supportive of Peggy and I during the winter and fall. It was also great to see some old friends and play some wonderful music. We arrived home on Sat. evening and today we are both feeling refreshed and ready to get into our Fall mode !!

Things are progressing nicely and over the last few weeks I have been able to eat some softer meats like chicken and roast beef and I am slowly beginning to put some more weight on. I am still resting during the day when I can, and enjoying the bursts of energy when they happen. The music work has become more comfortable and I don’t feel as panicked about performing as I did during the beginning of the summer, also my voice is slowly becoming a bit stronger even as low as it is. I feel a great sense of accomplishment having been able to perform most of my summer gigs. Although I still get a bit tired out it has been an enormous emotional and psychological boost! I hope to be able to have the peg tube taken out some time in the first few weeks of September if all goes well. I’ll also see the chemotherapy oncologist on Sept.14th. It has been such a treat to see so many of you at concerts throughout the summer. Words can’t describe how grateful I am to be able to be out playing music and for all the support shown to Peggy and I as my recovery progresses. We are really looking forward to our Fall music schedule and seeing so many of you along the way. Our friend Annette Backus from Maine sent us a wonderful “Soft Food” poem that I have posted below, Thanks Annette! Thanks so much again for all the support and I’ll look for you at 7:00.


The Food Mood
Annette Backus

The year I got Cancer, the doc’s had the answer
Soft foods were what I had to eat
So we pondered and thought, what’s allowed and what’s not
And developed a list - quite a feat

Some choices were clear, I could probably have beer
Although peanuts were out, what a bummer
I couldn’t eat steak, so make no mistake
This would not be my favorite summer

Although I’m quite mellow {?}, I couldn’t stand jello !
I really craved something to crunch
And I got quite rude, when thinking about food
Whether breakfast, or dinner or lunch.

So Peggy and I came up with a plan
That has worked for us all through my healing
What I can do, is pretend how to chew
Which can make any food quite appealing.

So… now I enjoy any food that I want
Crunchy or chewy, no matter
The only drawback to, though to “virtual” foods,
Is that they cannot make me fatter !

Tuesday, August 11, 2009

8/11/09 Small bursts of energy !!


It has been a wonderful week of traveling and performing with some really nice programs. Highlights include CafĂ© Lena, a dance at Tannery Pond and the Adirondack Music festival in Schroon Lake over the weekend. One of the best parts of doing the gigs is getting to see so many folks who have been so supportive of Peg and I during this whole process, it really is touching and for me quite emotional. I am starting to feel more comfortable performing, a month ago each job was a bit of a panic and I was not sure how things would work out, but the more we’re out playing the more natural it is beginning to feel. I am also starting to get some little bursts of energy every once in a while, it really gives me hope for things to turn around even more as time passes. Eating is still a chore but I have started to be able to eat some soft chicken and cold cuts and that has really helped a lot. Also this week I hade my first beer in over six months! The first sip went right up my nose but then things settled down and I was able to sip it down. Unfortunately it is still quite a job to get food and drink of any type down but the main thing is that I am seeing progress and that is a wonderful thing!! I am still getting quite tired from the performances but a little bit of napping can go a long way and the positive impact of being out working is just amazing.

Yesterday I saw the ENT and it was a really good visit. He reviewed my last pet scan and showed me where most of the up tick in activity is. Basically its right where most of the surgery and the bulk of the radiation was concentrated, so he also believes we need to wait until later this summer or fall when my throat has healed more to do another scan and see if things are looking clearer. He feels for a little over 3 months post treatment that I am doing great and actually was pretty amazed that I am able to do as much as I have been doing. He also was encouraging about the numbness in my hand. He has seen the carple tunnel nerve be affected by Chemotherapy many times before and thought there was a good chance that in time it might heal itself. He did look down my throat and told me it is far from being healed but the throat is making slow progress. The best news is I only need to see him every other month now, down from once a month and that is really encouraging!!

This is going to be another busy week but I am really looking forward to it! After the weekend I will doing a week of intergenerational camp at great camp Sagamore and if all goes well I may even be able to get the lost pond boat in the water. I can’t tell you thankful I am for each and every day and that I can be out doing what we love best, it really seems like a miracle to me after all that happened this Spring! But I know that this healing process would not be as successful without all of the wonderful thoughts and prayers coming from so many of you. I know I have said it before but it means so much to Peggy and I and I am so grateful. I look forward to seeing some of you later this summer and fall and as always I’ll be looking for you at 7:00 !!

Wednesday, July 29, 2009

7/29/09 “Carpe Diem” !!


We have all heard the old Latin saying “Carpe Diem”, loosely translated to mean seize the day. I have always loved this saying and for the most part tried to live my life the best that I could to make the most out of each day. But after going thru cancer and all that treatments bring to the table that old Latin saying has certainly taken on new life for me. It’s hard to put into words, but when you start having little moments of feeling like your old self things you are used to doing can take on a new or more intensive meaning. As I have been getting out and performing this has certainly become the case. And even though I am still a long way from the end of the recovery process I am so thankful to be out playing music. It can be exhausting and because weight has been hard to gain I really need a fair amount of help with hauling, setting up and breaking down sound. It looks like I will be able to do most of the summer performances, but I have had to cancel a few performances where I would be by myself for several nights in a row without help. But everyday takes on its own new meaning, and although we all know that life is finite and we have no guarantees in life, the moment, the day, this day becomes ever so sweeter. The photo this week is with my good friend Tom Hodgson at a concert we did in Brewerton NY last week . Last weekend we played for the Cranberry Dulcimer festival and this week I will be traveling with Peggy and doing some concerts with Peg and Dan Berggren later this week and this weekend. Eating is still the main issue but I am doing my best to get as many calories as I can, and I am in the process of writing some sort of soft food song !!! Slowly my energy level is coming back but it will be a while before my energy is back to what used to be normal. But the good news is that I am getting little pieces of that kind of energy every once in a while and music is usually involved. Stay tuned.

It has been wonderful to see so many of you as we are out doing concerts and workshops, it brings up to me the kindness and generosity that has been shown to Peggy and I this winter and spring. And for that I am forever grateful. Remember to make the most of every day, today is your day !! Carpe Diem !! I’ll look forward to seeing many of you as the summer progresses and in the meantime I’ll look for you at 7:00.

Wednesday, July 22, 2009

7/22/09 Setting goals


During March and April as I was going thru treatments it was really hard to see how any of our summer schedule would be able to happen. Looking thru the lens of uncertainty is a really difficult thing to do and none of us can tell the future. None the less I set it upon myself to have a few goals that I hoped I could reach. One goal was to be able to perform at the beginning of July with the Susquehanna String Band and the Symphony of Northern NY as well many other performance dates on the calendar for the summer season. The other main goal I had was to able to be healthy enough to attend my wife’s daughter Winter’s wedding. Right now I feel really good that I was able to achieve both of those goals. Not to say that it has been easy or without challenge! Traveling with the limited amount of things I can eat is a real challenge, as well as getting the amount of rest needed to be successful, especially for performances. But I feel pretty good about being able to meet the goals that I have set and hopefully meet the ones that I am setting right now for the future. Just like going thru Cancer treatments, a lot of the success we have or don’t have can be attributed to our mental attitude and positive outlook. Many folks that I talked too during the spring encouraged me to shy away from setting these kind of goals for I was only setting myself up for disappointment if they were not met. But I really had to have some concrete things to shoot for as we continue to go thru this long recovery process. Goals really do make a difference and when we are successful it just helps us to continue to reach the on going goals that we set in life !!

Well playing music has been just a wonderful thing to say the least !! Last week I did an intergenerational camp at Great Camp Sagamore and then drove to Poughepsie to Winters wedding and then back to Inlet for a Saturday evening concert on the lake with Peggy as the sun was setting. Things went well, but needless to say I really have to make adjustments to be able to perform with the challenges I am facing. One of the more interesting side effects has been my voice dropping in pitch. Its hard to sing where I used to so we have to lower the keys of the songs to adjust. This weekend I will be the featured Hammered Dulcimer artist at the Cranberry Dulcimer and Autoharp festival held at the Kellish Hill Farm in Pompey NY. I am really looking forward to it and especially the concert on Saturday night with Tom Hodgson and Henry Jankiewicz. The concerts are all open to the public so if you are around central NY. I would love to see you. Also a great big thank you to Carl Heilman, Dan Berggren, Casie Filliaci, and Nancy Brown for holding the wonderful benefit for Peggy and I last Sunday night at Tannery Pond community center in North Creek NY. I was too pooped to make it but all the reports were fantastic and Peg and I so appreciate all the time and effort donated to make the event such a success. And a big thank you to all of you who have been so incredibly encouraging and supportive as we go thru this recovery period. Remember to set goals for yourself, it can really help to keep us on track. I look forward to hopefully seeing many of you later this summer and as always I will look for you at 7:00 !

Tuesday, July 14, 2009

7/14/09 Lessons Learned !


One of the first things we did when we started going thru this Cancer maze was to start an accordion file and keep copies of all of our many scans, reports etc. so we always would have them when seeing different doctors. After having the last pet scan, {we had to wait quite a while to get results} and after things looked a bit unsettled I just wanted to get in the car and put a lot of this behind us, which is exactly what we did. This week I went to see the ENT {ear, nose and throat specialist} who I see each month to make sure there are no changes and I was really looking forward to getting his take on the latest Pet scan. But when I finally got to see him, he did not have a copy of the scan and I was just kicking myself for momentarily letting my guard down and not having copies of the latest scan. The next morning I called over to the oncologist office and had them fax a copy over to me. I was reminded once again that you have to be your strongest advocate when dealing with all of the people who are helping you thru your treatment and recovery.So next month when the ENT tells me he doesn't have a copy of pet scan I can just say here you go. If you can’t advocate for yourself then no one else most likely will !! A lesson well learned.

This week I am doing the music for the intergenerational camp at Great Camp Sagamore. I have a class with kids in the morning and then one in the afternoon and some activity in the evening. Last night we had a dance and I was so pleased at how well things went. My good friend Tom Hodgson joined me and it was just a treat to get to play and call again. I am really learning to pace myself, to make really good use of the headset microphone, and I make sure to get lots of rest {two naps on monday !}. Although the work does tire me out it is so wonderful to be out performing and doing my best at filling my summer schedule. The one thing that this whole experience has taught me is to be thankful for each day as it comes along. Every day will have it challenges but its how we meet those challenges that make the difference. Once again Peggy and I are so thankful for all of your generous help and support, it continues to make a huge difference as I go through these months of recovery. Also speaking of benefits, Dan Berggren and Carl Heilman will host a benefit for Peggy and I this Sunday evening July 19th at the Tannery Pond Community center in North Creek NY. Carl will present his new program “I am the Adirondacks” that Dan, Peggy, Casie Filiachi and I did the music for. It is a wonderful program and we are ever thankful to Dan and Carl for putting the benefit together. We truly hope to see some of you at some point this summer and in the meantime keep those vibes coming !! I’ll look for you at 7:00 !

Tuesday, July 7, 2009

7/07/09 Persistence !!


This has been a really enjoyable week. I was able to do the performances with the Susquehanna String Band and the Symphony of Northern NY. The music was wonderful and lifted our spirits and certainly brightened our day. Not to mention how great it was to see and hang out with Rick and John for a few days. But I am finding that doing the gigs this summer will take a lot forethought, energy and persistence! My energy level is still considerably lower than what is normal for me, and one of the biggest challenges right now is eating on the road. I take some soft food with me and everything that is needed for the peg tube. Getting enough calories to sustain things is really a challenge and going out to eat can be an adventure!! I do really well at the 24 hour breakfast places! Eggs, pancakes, and omelets all manna from heaven right now. I am also trying to be smart about having enough time to rest up before and after jobs. Last night I called the dance for the intergenerational camp here at Great Camp Sagamore in northern NY. With the help of the remote headset microphone things went pretty well. I am finding that my voice has become a bit deeper, (the speech therapist mentioned that this is really common from radiation anywhere near the vocal chords) and when I sing I will need to lower the keys of the songs so singing will be more comfortable !

As I look at our summer performance schedule, I know that I will have to take one day at a time and be as persistent as I can until things start to level out a little more.And as challenging as things may seem, I am truly thrilled to be able to be making music this summer. Positive attitude and persistence are two things that my Dad passed down to me and now I am finding the great virtue of these during this challenge of recovering from cancer treatments! I will continue to see the ENT every month and the oncologists every three months. In the meantime, I’ll keep the blog going every week with any updates that do occur! I hope to see you at a performance sometime this summer. And remember the power of persistence, if at first you don’t succeed, try, try again. Thanks so much again for all the support and thoughts that are coming our way, it is appreciated more than you will ever know . I’ll look for you at 7:00.

Monday, June 29, 2009

6/29/09 A time for giving thanks .


It was wonderful to get away last week, even for just a few days. We got to see Peggy’s daughter Winter in New Paltz and then went on to Cape Cod and Martha’s Vineyard. The weather at the coast has been cold and rainy for the last two months, but the two days we were at Oak Bluffs the sun was out for most of the day. It was wonderful. Eating on the road is a real adventure but it seems that I can find some soft food almost anywhere we go, in fact the seafood pastas { scallops, shrimp etc. } were really nice and I even had a hint of the taste of the seafood. Now that is something to be thankful for! Even though we did not get the news we had hoped for with the petscan last week, we are thankful that things are slowly moving on and in a few more months when we do another scan hopefully my throat will be in better shape so the scan can be more conclusive! For now I am not letting it cross my mind and am just enjoying being able to get out and enjoy all that summer has to offer !!! We saw a wonderful t shirt that we both really loved but unfortunately the store was closed and we were taking the first ferry off the island when we saw it. It said “Skinny men are sexy !!!”, so I hope to make that my motto as I am trying to put some weight back on !

I am really excited about the week ahead. Tomorrow we go to Potsdam where I will be playing with the Susquehanna String band. On Tuesday night we play for the CYM music camp and on Wednesday and Thursday night its concerts with the Symphony of Northern NY, Wednesday in Potsdam and Thursday at the Clayton opera house. I am absolutely thrilled that I am able to do these dates, even though I will need to conserve my energy. In March during treatments I had no idea if I would even be able to consider these concert dates and now that it looks like a reality I could not be more thankful. I know how much work it will be in my current shape, but I am more than up for the challenge. The power of making wonderful music has always been my heart beat and as I start to come around from all of this I can appreciate it even more than ever. I hope we do get to see some of you in our travels this summer. Once again we are so thankful for all your support and encouragement. Have a wonderful week and a great July 4th holiday. And if you think about it take some time to be thankful for all that you have been blessed with, we are all truly blessed ! I’ll look for you at 7:00.

Tuesday, June 23, 2009

6/23/09 An Imperfect Science !


If there is one thing I have learned from this experience with Cancer it is that whenever you are looking for a definitive answer, especially from tests, you very rarely get one. This was the case with the PET scan on Monday. PET scans can tell you where there is unusually active cell growth and because cancer cells replicate so quickly they can be very useful in finding cancer cells. They also can find other cells that are doing the same thing. The scan on Monday was a bit “murky” as our oncologist put it. There is a slight uptake in cell activity in the region where the original cancer site was located months ago, but this could only be telling us that because of all the swelling and soreness in that area of my throat from surgery and radiation. With that exception the rest of the scan was clear. The Radiation oncologist was not alarmed and said when the throat finally levels out we’ll do another scan and have a better idea. He said that it happens a lot and the business of reading these scans can be an imperfect science! Not the “cancer free” results we had hoped for but not really bad news either, just more questions! I don’t need to meet the radiation people for another three months and that is great. I will meet the ENT every month for at least this year. In the meantime I’ll continue to do my best to heal up, eat what I can and get ready for our summer schedule of concerts and workshops. Peggy and I are taking a few days off and going away for a little R&R which is a wonderful thing right now! Thanks again for the vibes and wonderful thoughts sent our way, it really means a lot! I’ll look for you at 7:00.

Sunday, June 21, 2009

6/21/09 Happy Solstice Day !


It has been a really busy week for us. On Monday, I met with the Chemotherapy oncologist and they think that in general things are going really well. The swallowing issues and pain in the throat will be around for a while, but my energy level seems to be getting better. The labs looked good and I won’t need to see the chemo people for another three months!! Tuesday afternoon Peggy and I did two school assembly programs at Morrisville Eaton Central School. The programs went quite well; I still cannot sing very much but that will be coming along soon!! On Thursday we went to Indian Lake to do the Heritage program with our good friend and music colleague, Dan Berggren. It was really fun and after working with the kids during the day we did an evening concert with them at the Indian Lake Theater. The program went great and it was so wonderful to see so many friends who have been pulling for us the last few months. In fact the good folks in Indian Lake came up with the 7:00 Vibe, and you know the rest of the story!

Tomorrow is a really big day. At around 9:30, I’ll have a PET scan to see if there are still any cancer cells left in my body. It’s a bit nerve-wracking, but we are hoping for the best. I would ask a big favor of all of you. If we can have an extra vibe time around 9:30 am on Monday morning that would be wonderful, just put those great positive thoughts out there and I know that things will work out. I will put up a post on Monday night or Tuesday as soon I know the results. If all goes well Peggy and I are going to try get away for a few well deserved days of R & R later this week!! To all of you who have been so supportive with your cards, thoughts, and generosity we send you our sincere thanks and gratitude. You all will never know how much this community has lifted our spirits and empowered us when we needed it the most. I am a firm believer of the power of positive thinking (thanks Pops!), and even more the power of the collective positive thoughts that all of you have been taking part in. Happy Solstice and Happy Fathers Day to all of you, I’ll look for you tomorrow at 9:30 and 7:00.

Sunday, June 14, 2009

6/14/09 Buds on the tree !!


Many of you may remember that I ended radiation treatments on April 24th which turned out to be arbor day. I know that many of you planted a tree and Peg and I planted an Oak at the top of the hill on our property. Well for the last seven weeks that Oak tree has looked like it was not going to do anything, no buds just a stick ! We were both disappointed but with everything else with patience things can happen. Well this week the little oak tree started to bud and now there are leaves coming out on it. It looks like it is mirroring my journey, slow and steady but nonetheless the little memorial oak tree is alive and well and that is a very wonderful thing !

It has been a slow steady week, eating is still a job and the right side of my throat still is quite painful but we are plotting on !! Soft foods, lots of eggs, oats, soft muffins, pasta etc. with lots of butter for calories and help to slid down the throat. So with what I’m eating and the Peg tube feeding, I hope to start putting on a few more pounds as the days go by. This week I meet with my dentist. The radiation can be really difficult on your teeth and gums so I was a little nervous. But alas all the brushing, flossing and rinsing has paid off and my teeth and gums are going to be OK. That was great news to hear! This week we will have labs and have a visit with the Chemo oncologist. And next week, June 22nd I’ll have a petscan to see if all the cancer is gone. We’ll keep our fingers crossed and I’ll ask all of you to put out especially powerful vibes that day!

Well yesterday was another first, I played for a wedding at the Aurora inn in Aurora NY. It went really well, both the ceremony and brunch and I felt really good about it. I packed up sound, visited with good friend Tom Hodgson and came home and had a two hour nap !! But overall things are beginning to happen. Peg and I have a few gigs coming up this week and I am looking forward to playing together. One side effect of the chemotherapy has been a tingling or numbing of my thumb and first two fingers on my right hand. I can play just fine with that but would be really happy if eventually it would go back to normal, that is what I am visualizing. It would be great if all you could visualize the numbing going away and my hand returning to normal. I know the power of numbers and positive thinking and have seen it throughout this long process !! Thank you so much for everything, your kind words, notes, and generosity really means more to Peggy and I than you will ever know. Have a great week and I’ll look for you at 7:00!

Sunday, June 7, 2009

6/07/09 A Garden of Thoughts !


Well it has been a relatively good week. I am slowly trying to increase what I am able to eat. This weekend I was able to eat some French toast, { Sorry no freedom fries ! } some pancakes, and a soft muffin {lathered in butter and warmed up in the microwave ! }. So things are slowly beginning to improve. The throat is still really struggling but I am giving it my best. The tube feedings are also happening after every meal, but to date I don’t believe that I’ve been able to put on any pounds, but I hope that won’t be too far off. About half way thru the week I realized that this week was going to be a little bit different from many of the previous weeks. This past week we did not have to see any doctors, first time since the end of January, and boy was it nice !! Ah let the healing continue.

This weekend we ended up canceling the master class at our farm, but decided to invite a few of the students to come and have a visit and stay over on Friday night. It was a wonderful visit and we all got to play some music and sit around our new fire pit { Thanks to Peggy ! }, and had a wonderful fire. On Saturday Cathy Marczak presented us with this beautiful garden of cardboard flowers but the best part was that the flowers each have a comment from the blog. It really is a wonderful thing and reminds me of how insightful so many of you have been !! Thanks so much Cathy and Ron. On Sat. we got to play some great music and also took a visit the heron rookery at Sterling Nature Center about 15 minutes from our home. Over twenty pair of nesting great blue herons, what an inspiration. Today Peg and I were able to go our Unitarian service in Syracuse. It was the first time I had been able to go to church since late Jan. and it was wonderful. It was so great to see our friends at the church, really emotional and uplifting. So slowly but surely things are starting to have a sense of order again, far from normality but we are definitely getting there !!

Once again as we navigate these new waters, I am ever so thankful for all of your continued support for Peggy and I. I am brought to tears many times throughout the week just reflecting on how lucky we are to have such a great supportive group of friends!! Thanks so much again for everything, I’ll look for you at 7:00 !

Saturday, May 30, 2009

5/30/09 Slow and steady wins the race !!


Lately this has become my motto; “Slow and steady wins the race.” Everyday there is a little progress and yet there is a lot of progress to be made on many fronts. Eating is still quite difficult due to the soreness of my throat, but every day I am managing to eat some soft and liquid food. Also the peg tube is taking up the slack and helping to try to equalize everything out! Gaining weight does not to seem to be happening yet, but once the throat levels out, I think all of that will come easier. I do at moments feel a bit like my old self, and when that happens it is a wonderful thing for as long as it lasts. Anything that gives you a sense of normalcy is a great thing.

It was wonderful to be at Sagamore over the Memorial Day weekend. We had a wonderful concert for the volunteers, and many of them were old friends so it was almost like a homecoming. When I get to play music the sensations are overwhelming; it feels like a miracle that after all we’ve been through the music can still flow quite freely. My voice is sill not ready for primetime singing but I am hoping that this summer it will be fine. I do get a bit tired and overwhelmed at times but overall I can begin to see some positive changes. I am jut looking forward to my throat and the mucus leveling out. This week Peggy and I also got to do some work in the studio recording a song that Peg wrote for Winter’s wedding and a march that I wrote for the wedding. Both came out great and it is wonderful to be able to work at the console again. I look forward to many long hours recording and mixing in the future. Peg's daughter Winter is visiting and last night we made my first trip out to a restaurant since most of this started. Our friends Bonnie and H own the Pleasant Beach in Fair Haven and it was so nice to see them and their whole staff. Eating out is a real challenge and it’s hard to find food that will actually go down smoothly but they managed to help me out. It was a wonderful step and I look forward to many more “firsts” as the healing continues. Slow and steady wins the race!

We had an appointment with the ENT surgeon this week. It was the first time I had seen him since having surgery in Feb. He seems to feel that I am doing relatively well and just repeated what all of the doctors have told us. This is a slow process and learn to live in the moment and appreciate any little bit of change that can happen. I will need to see him once a month for a year to keep track of my throat and tongue area and make sure things stay healed. When we asked about what might be safe to eat at this point he said we use the stick test. If you can throw it against the wall and it sticks it should be OK for me to try to eat it. Seems a bit broad to me but if it will work we’ll try it !!

Once again, as we slowly go through this healing phase we are so thankful for all of your wonderful thoughts, concerns and generosity. This entire thing has been so humbling to me and I am forever grateful. As you ponder all you have to do in your busy world, don’t forget to take some time and try to live in the moment, it really is all we have right now! Thanks so much again and I’ll look for everyone around 7:00 pm.

Saturday, May 23, 2009

5/22/09 An Epiglottis is a terrible thing to waste!


As many of you know, the epiglottis is a flap of tissue that sits at the base of the tongue and keeps food from going into the trachea, or windpipe, during swallowing. During treatment for head and neck cancer, especially cancer at the base of tongue the epiglottis can easily become damaged from the intensity of the radiation treatments. This can result in long rehabilitation times before patients can eat or even attempt to eat. With this on our minds I had a barium swallow test done earlier this week with my speech pathologist to see if everything was working properly. Even though there is still a great deal of pain swallowing, my epiglottis is doing what it is supposed to. This is really good news! I was cleared to try eating liquids and some soft food. So we have had some soup, yogurt, pasta, eggs etc. this week. Even though the throat is still sore when swallowing it is really nice to start supplementing the diet with some real food besides what I put in the peg tube!! My hope is that in time the throat will become more comfortable with eating and it will be easier to regain the weight I need. The old taste buds still aren’t sure what’s going in there but it is hoped that will change in time too!!

I saw both the chemo and radiation oncologists this week and they are really pleased with my progress. I don’t see the chemo oncologist for a month now and I no longer will need to go and get extra fluids. I also will not need to see the radiation oncologist for a month. We will have a pet scan on June 22nd to see how everything looks and I will be able to speak with the doc that day about the results, and that is really great! The mucus and dry mouth are still an issue but seems to be getting a little bit better every day. So overall very good news this week!

Peggy and I are playing at great Camp Sagamore on Saturday night to do a little concert for the clean up crew that volunteers to come and help open the place for the summer. It is really my first overnight out since January and we are both really excited about it! I’ll bring all the peg tube stuff but also see what I can try during mealtime that might be soft enough to do the trick. I’m not singing yet but it will be wonderful to play! So we are feeling more hopeful by the day. Thanks so much again for all your continued support and wonderful vibes, it means so much to Peggy and I. I hope that you all have a wonderful memorial day weekend and we’ll look for you around 7:00 pm. Be thankful for that epiglottis you have that keeps your food headed in the right direction. Where would you be without it ?

Saturday, May 16, 2009

5/16/09 Baby Steps


We are now three weeks out from chemo and radiation, and things are moving ever so slowly but there are a few promising signs. I went to see the speech pathologist at Clifton Springs and she helped me to swallow some water and some tea. She feels that for three weeks out things are actually going pretty well. I will meet with her again on Monday and they are going to do what’s called a barium swallow, where they actually take X-ray pictures of you swallowing to make sure that there are not any abnormalities. If everything checks out OK she’ll put a plan together to have me start on a liquid diet and hopefully work our way to more solids in time. In the meantime time I have been trying to have a cup of cool herbal tea each day and one day I even had a half a cup of egg drop soup! It still hurts to swallow and feels extremely foreign but I’m working hard to make it happen. I also have been doing 3 to 4 tube feedings a day to try to maintain my current weight until I can once again eat to put weight back on. The mucus is still an enormous issue and has not gotten any better yet, but I know in time it will. Peggy and I did an elementary school assembly close to home in Volney NY. yesterday. I really cannot sing but it was wonderful to play and be in the groove. I had to clear stuff out of my throat between each song, but it was doable. It was really exhausting but felt good to be out doing some work. It made me feel hopeful for performing in the future! In general my energy level is beginning to come up a little bit, and every once in a while I actually get a hint of normality, and I hope those will become more frequent as we move along thru Spring and Summer.

I really want to thank everyone who helped out to make the benefit for Peggy and I, held at Blueseed studio last night. We were not able to attend but from what I understand it was sold out and was a really wonderful time. Many thanks to Carol, Dan, Roy, Jamie, Lisa, Klaus, Fran and all the volunteers and concert goers who made the event such a success !! A big Thank you to all of you, we are forever grateful.

Spring is truly in the air, the days are longer, the birds are singing, the lilacs are all in bloom and the grass is growing faster than we can keep up with. Spring of coarse is the season of hope, and with these lovely spring days I remain hopeful with each passing day. We are as always so grateful to all of you for your continued support and encouragement as we continue with this healing process. Thanks to all of you for all you do and I so look forward to seeing you at 7:00.

Friday, May 8, 2009

5/08/09 Not by the hair on my Chiny, Chin, Chin !


There are lots of casualties from radiation and chemotherapy. Some folks loose their hair and some have no problems at all with hair loss and nausea. Everybody is different and our bodies all react in different ways. My casualty is my beard. The IMRT radiation machine was so close to my face that it took most of my beard with it! After 25 years of living as a fuzzy face, I shaved the remnants of my beard {or what was left of it} this week. I still do have a nice thick mustache so that is a fun thing! Peggy had never seen my chin and she seems happy to know that I actually have one!! In fact many of you may have never seen my chin either so I have put up the jpg so you can see for yourself. I am sad to loose the beard but in a lot of ways it kind of signals a new beginning.

This week we have been in kind of a holding pattern from last week. I am doing my best to hold my weight with the peg tube and swallowing has not improved so eating and drinking are still not possible, and I still have enough mucus to float a boat! On the positive side the clinic has cut my hydration days down to two times a week down from three times a week last week, and they have also cut the amount of hydration I get in half. Peggy tells me she can see improvement everyday, I still don’t feel a lot better but I am hopeful that in the next few weeks things will begin to pickup quite a bit. Baby steps. We have had several friends come to visit this week and that is always wonderful. And now that spring is officially here, I am really pleased to let you know that I actually mowed the lawn with my tractor this week. I know it’s only sitting on a tractor but it is a wonderful thing. Anything that I can do that gives me a sense of normality is a big step forward, even mowing the lawn with the tractor.

Peggy and I have been so humbled by your generosity, thoughts, insights and concerns. As a person not used to being on this end,I can honestly tell you that words can’t do justice to express our thanks. You really lift us up when we need it and give us wonderful perspective that sometimes either of us may be able to see. From the bottom of hearts we send you our sincere thanks and appreciation to all of you, this amazing extended family. Keep those thoughts coming our way and I’ll look forward to seeing all of you at 7:00 PM.

Saturday, May 2, 2009

5/02/09 A Time for Patience


This first full week after treatments has been one of relief, hope and expectations of change. The radiation is still working throughout my mouth and head and continues to cause a great deal of discomfort. Besides the pain in my throat the most frustrating thing is the mucus that is coating most of my mouth. It has become very difficult to get rid of and is a by product of the tissue being burned from the radiation. Unfortunately the salivary glands are on vacation right now so they are not helping to thin things out. I did go to Clifton Springs three days this week, {I drove my self, thank you very much!} for hydration and that seems to help a bit. I most likely will do three days again this week to try to keep things as hydrated as possible! Swallowing and eating are still not possible so everything is still going thru the Peg tube. I am really missing eating, especially the social aspect and I so look forward to the day when I can once again sit down with my wife and enjoy a good meal together. Change will come, but it will come slowly and I must be patient and allow the change to slowly come to me. I have noticed a few times this week a little pick up in energy but in general terms my energy level is still pretty low but once again it should slowly pick up with time.


The lesson here for me is a life long issue I have always struggled with. Patience! I know that change will come in time and slowly, but I need to be as patient as possible. I am thankful for each day and watch change slowly happen through the miracle of spring. It is so wonderful to see all the flowers, trees and shrubs opening up and showing off their lovely spring coats. Everyday there is something new to celebrate. Just like spring, I look forward to my body becoming stronger and stronger with each passing week and month and my mind accepting the change that may come. And I look forward to working on becoming the most patient person I can possibly be!! I once again thank all of you for your generosity, love, support, and overall kindness. I thank my lucky stars every day for the wonderful support network that has developed. It shows me each day what an amazing circle of friends we all have. You really lift me up when I need it. I look forward to seeing you all at 7:00.

Saturday, April 25, 2009

4/25/09 Time to let the healing begin.




Well after four months, three surgeries, 35 radiation treatments, 2 infusion chemotherapy sessions, and nearly 30 pounds lighter I have officially ended the treatment part of this process. It was a wonderful mental milestone to reach yesterday. Unfortunately my body has been pretty well battered but my spirit seems to be able to see past all of this. Right now I cannot swallow at all so all fluids, pills and feeding have to come through the peg tube. The radiation oncologist explained that the radiation will still continue to work in my mouth for at least two weeks, so as soon as the pain and swelling start to subside I should be able to start drinking some fluids and trying softer foods. Due to the nature of treatments my taste buds are pretty fried, so for the first little while eating will become quite a chore! It is impossible to try to tie down a timetable but as soon as I can hold my weight by just eating on my own they will remove the peg tube, maybe 1.5 to 2 months. There are also side effects that will hang around for a while. The salivary glands will hopefully work a little better in several months and I’ll look forward to a let up with the constant mucus. I will be going to Clifton Springs three days next week and possible the following week for intravenous hydration. But today is a day to celebrate! We’ve made it through the seven week treatment in decent condition. I’ll hold on to these triumphs as we go through the weeks and months ahead!

A very special thank you goes out to Mary Durocher and her family and Kitty Dates and her family for all the work they put in to make the spaghetti supper such a success. They served hundreds of meals and raised a great deal of money for Peggy and I. We can’t tell you how much we appreciate the effort and how humbled we are by the support of our local community. Thanks so much again to all who attended and made the event such a wonderful success!


I am well aware of how slowly the healing phase of this process can be and I know that I will need to have a lot of patience as we proceed with the healing and begin to understand how all the changes will effect my life. I am doing my best to let go of expectations and I will do my best to celebrate each little milestone. Right now I really miss being able to eat and drink by mouth and I look forward to sharing a meal with my lovely wife sometime as we move on! But today is for celebrating, reaching a milestone that seemed so distant two month ago!! Keep the good vibes coming; this wonderful community of friends helps Peggy and I more than you will ever know. As I mentioned in one of my last posts, yesterday was Arbor Day and I have included a jpg of the Oak tree that we planted yesterday afternoon. I look forward to many cancer free years being marked by the growth of this mighty Oak!! See you all at 7:00!

Wednesday, April 22, 2009

April 22/09 Spaghetti Supper


On Friday evening April 24th my good friends Mary Durocher and Kitty Dates are having a Spaghetti supper here in Red Creek to benefit Peggy and I. It will be held at the Methodist church on Church St. in Red Creek between the hours of 4:30-7:00 PM. So if you happen to be up in the area or would like to make a nice country drive I know that Mary and Kitty would love to see you and they will treat you right! If you would like more information contact Mary Durocher at 315-947-6096.

Sunday, April 19, 2009

4/19/09 One week of treatment to go !


This week has been all about holding on. Every day is one more day off the calendar and everyday things get a little more difficult. It has become more difficult to swallow any pills, so more are going into the peg tube. The phlegm has become so thick that it is really tough to deal with. We’re doing the usual things to try to thin it out but right now the salivary glands are not working well due to the radiation, so it just can’t keep up with it and thin it out. In fact it has been making it difficult to sleep at night. Right now morphine is the only help with the mouth sores and sleeping. Also the next few weeks we'll be going in for extra hydration several times. So this week is under our belt, and I imagine that our last week will be the most difficult to deal with. I am really looking forward to having the treatments be finished so we can start the healing phase of this process. The radiation will continue to do its thing for two weeks after we are done. Once things begin to heal up some in my mouth, I should be able to try to start eating again, but it is a tricky process and so much depends on how the healing goes. I need to be able to re-learn to eat, and once I can maintain my weight from eating the peg tube will be removed, most likely 1.5 to 2 months. But before we can even start the healing process there is this week to get through, one day at a time.

I had a really nice conversation with old friend and fellow head and neck cancer compatriot, James Durst. James' situation is very similar to mine, the main site is the base of tongue and he had 33 radiation treatments with infusion chemotherapy. James finished his treatments up this week and it was wonderful to swap notes. James is a great singer and guitar player and is currently working with our good friend Mark Murphy, on a wonderful program called “The Work of the Weavers.” Congratulations to James who is now starting the long healing journey after this tough treatment. It seems that he came out in one piece and I wish him all the best. I’m sure we will be swapping notes again before too long.

Yesterday our good friend Eric Ludwig and his wife Joan, along with Tom Hodgson came by for the day and we rented a wood splitter from our local Agway store. Along with Peggy they got all the wood split and stacked from the three maple trees that were taken down in our yard last fall!! Thanks so much guys, what a wonderful job!!

Well once again I am totally blown away by all of your generosity, kindness, insight, and just plain hopefulness during these days of holding on tight. Your support means more than any of you will ever know. Last week to go, keep those vibes coming strong!! I’ll look for all of you at 7:00 pm.

Saturday, April 11, 2009

4/11/09 Five weeks down, two to go !!


Well it seems like we can finally see a glimpse of the light at the end of tunnel. Every week becomes a little more difficult and the side effects of both the chemotherapy and the radiation are more defined. To date I have lost around 25 lbs and all nourishment is now taken in through the peg tube. Peggy makes some great juices, carrot with apple to put in the tube, it really helps a lot. The canned nutrition is bland and hard to hold down with the nausea from the chemo. I do my best to keep things down but it is pretty difficult. I am getting extra fluids intravenously about every other day at the clinic. Due to the weight loss we had to make a new mask and fine tune the radiation plan. The new plan was started on Friday.

After several conversations with oncologists and other doctors, we have made the decision to forgo the last series of chemotherapy that was scheduled for the last week of treatment. The chemotherapy is to help the radiation along, but is not the main course of treatment. In fact, many clinics throughout the country including Sloan Kettering have started to drop the last chemo treatment for several reasons, the main is the benefit versus the side effects and the problems with recovery time. Peg and I both realize if I do the last chemo session that most likely I will end up in the hospital for at least a week due to more weight loss. Our radiation oncologist agrees with our decision, and in fact let us know that about 65% of his head and neck cancer patients forgo the last chemo treatment and the cure rates are about the same! He also feels that the first two chemo sessions are the most important. So we are hoping the next two weeks will go quickly and we can get through whatever comes our way. Once treatment is done the radiation will continue to work on its own for about two weeks, and then the slow healing process can begin.

Well if all goes well treatments will end on April 24th which quite amazingly is also Arbor Day!! Peggy and I are going to plant an oak tree in our yard and hope to see it grow tall and strong with every passing cancer free year! Here is another favor I would ask all of you to try if you are able. On arbor day plant a tree, if you can, if you would like to dedicate it to my recovery that would be great but that is really not the point. Plant a tree for any one in your life that has been affected by cancer. I can’t think of a better tribute!!


Once again I have been so humbled and honored by all of your notes and thoughts. And a special thank you to all of you who have been taking part in the “Change is Coming” program set up by Cathy Marczyk. Peggy and I have been floored by all of your generosity. It will certainly go to good use. Thank you from the bottom of our hearts. Pray for a quick two weeks and I will look for all of you at 7:00 pm.

Sunday, April 5, 2009

4/05/09 “Change has come”, and in a big way !


Over the last few weeks I have been receiving emails stating “Change is coming” stay tuned. After one or two I thought nothing of it but they just kept coming. And this week checks began arriving from folks who had saved their change for the month of March and then in turn forwarded it to Peggy and I as April showers. I can’t believe the response to this, we have heard from people all over the country, and April has just begun! To those of you who have participated in this our heart felt thanks to each and every one of you. And I know that Cathy Marczyk spearheaded the whole idea so a great big hug and thank you to Cathy and Ron, what a wonderful idea and it could not have come at a better time.

This was a difficult week to put it mildly. Chemo on Monday with all of the cumulative effects of the radiation kicking in and you have a real tough situation. We have been experimenting with using the peg tube and one of the nurses put us on a medication to take half an hour before attempting a feeding. Every time we would use the peg tube fifteen minutes after eating I would have terrible diarrhea and lose everything I had just attempted to put into my stomach. Also the chemo has a caused a lot of vomiting and dry heaves this week which have been extremely uncomfortable. So weight loss was an issue as the week progressed. In fact most of the weekend was spent in bed between anti-nausea drugs. We did get extra fluids at the hospital every day this week and that helped a little bit. We also have have stopped using the medication before tube feeding and if we can plan it between the Lorazipam and the Compozine we have a decent chance of keeping it down!! Also this week the killer mucus started in my mouth. What makes it tough is it gets really thick and the salivary glands have stopped doing the job of thinning things out, so it is near impossible to clear from your mouth. I rinse with salt water about 25 times a day and that can help a bit. Good friend Dan Berggren came to drive me on Tuesday, Wednesday and Thursday and it was great to see him. I realize that these next three weeks will just get more and more difficult and I pray for all your positive thoughts as we move forward. Here is praying for a better week this week.

I once again thank all of you for your beautiful expressions of love and concern for Peggy and I. I have been so humbled by all of your support and I pray that I will have the strength to see through the next three weeks and then on to putting ourselves back together! Also thank you for your generosity, the “Change is Coming” campaign is a stroke of genius and all your support is so appreciated!! I’ll look for you all at 7.00.

Sunday, March 29, 2009

3/29/09 Three weeks down four to go!!


This has been a pretty nice weekend, all things considered. On Friday my good friend John Ohara took me to Clifton Springs and after treatment I set up the hammered dulcimer and played for the folks in the chemo lab and the radiation lab. It was really wonderful, and felt like a miracle to be able to play for folks right now. When we got home I was completely exhausted and pretty much collapsed into bed, but it was worth every minute! On Saturday afternoon we went to the labyrinth walk that was held in our honor at the McCrobie building in Oswego. It was a wonderful event and was so deeply moving. The room was filled with so much love and support from this wonderful community of friends. I felt as if I was wrapped in a protective blanket of all these concerned friends who will help me see to it that the cancer will be gone after I do my part with these treatments. It was a wonderfully moving afternoon and a big thank you to Judith Ann for setting the whole thing up and to those who came out to walk the labyrinth and show their support. Also a big thank you to those of you who walked a labyrinth at another location and those of you who did the “finger walk” labrynith. I have put up a file with about 20 jpgs from the afternoon. Here is the url; just open the file and you’ll see thumbnails that can enlarged.


http://www.box.net/shared/qcdoe74i04


Tomorrow will be a long day, chemotherapy in the morning and radiation in the afternoon. The effects of the treatments are starting being felt quite extensively.
My throat is really sore and eating becomes more difficult everyday. We will start to use the feeding tube today or tomorrow. My voice is really weak and I think that I’ll be doing a lot of texting over the next few weeks. My beard is coming out in clumps and most likely will disappear before too long. This is all caused by how close the radiation machine needs to be to my face. So for all of you who have ever wondered what my chin actually looks like you might just get your chance to find out! I still am dealing with some nausea and I’m sure that it will be an issue again as we start round two of chemo. Hopefully we can get a leg up on it early in game this time around.

Once again I am constantly finding myself humbled and blessed by this wonderful community. Your thoughts, notes, and generosity have overwhelmed Peggy and I and we are so grateful for all that you are doing. As we continue these next four weeks of treatments I am well aware how difficult things will become. I will do my best to keep you all up to date, and I’ll look for all your wonderful vibes as we move on through all of this. Spring is almost here, the trilliums will be out in a month and we hopefully will have these treatments done by the end of April. Thanks so much again and I’ll look for you at 7:00! By the way, to date “For the Love of Friends” has been downloaded 990 times!

Wednesday, March 25, 2009

3/25/09 To taste is human to swallow divine


Before having head and neck cancer I often took for granted all the complicated processes that happen in your mouth. How the salivary glands keep everything moist and help to protect your teeth, how your taste buds give you a good idea of the food you are about to eat and how swallowing, which is a complicated function using many muscles is something we just do. Well whatever shape I am in after these treatments I will never take any of these great gifts for granted! I am in the middle of week three of treatment and on a positive note my energy level has picked up a little bit and I have been able to walk with Peg and Zeus {our lab, border collie mix } a few times around the back field each day, and truly loving it! Unfortunately the radiation has started to catch up with me and my throat has become really sore with swallowing being quite difficult.I was given a prescription for some liquid that numbs my throat and that has helped a little bit, but it will only be a short term fix. Food has begun to taste really strange,and especially the after taste. My goal is to be able to keep eating all I can this week and then begin to use the peg tube next week.I was aware of all this going in, but when it starts to happen it certainly is a different story all together! I think we are going to take the juicer and the blender for quite a ride.

On Monday we went to see a naturopath who is part of Clifton Springs hospital. He is a really nice guy and will help me to have a total body healing approach once the treatments are done and we need to put things back together.I think it will be a big help as we go through this entire process. Monday is the second Chemo treatment and I hope we’ll be able to soften some of the side effects with the knowledge of how my body reacted to the first treatment. Time will tell. But right now I am trying my best to take one day at a time, and pull the best from each day we can !! Today was near 60 and there really was not a chill in the air at all. The farmers up the road are tilling the fields and the sweet smell of good soil is everywhere !!

I continue to be so humbled by the graciousness and concern from so many of you. I can’t tell you how much it lifts us up and helps us to get thru another day. This circle of hope as I like to call it is truly a gift that continues to surprise us day in and day out. I can’t thank you all enough and when this process is done I will never forget how kind and caring so many of you have been. Speaking of amazing, my wonderful wife Peggy has been great through all of this and I really don’t know how I would do this without her. My sadness is how stressful this is for her, but I am constantly amazed at how gracefully she has been able to juggle this, teaching and performing. In so many ways I feel so fortunate. I do hope to see some of you at the labyrinth walk in Oswego on Saturday. If not I’ll look for you at seven! On Friday we’ll have three weeks down and four to go! Oh and humor me, the next time you eat a really nice meal, give thought to the entire process that makes that possible, it really is amazing.

Saturday, March 21, 2009

3/21/09 Labirynth Walk


Here's a press release for a Labirynth Walk to be held in Oswego next weekend. If your in the area I would love to see you !

The Oswego Music Hall is having a healing “Labyrinth” walk for long-time Music Hall contributor and musician Dan Duggan on Saturday, March 28, from 3 – 7 PM, in the McCrobie Civic Center, 41 Lake Street, Oswego. Created and provided by Judith Ann Benedict, this cloth labyrinth is an exact replica of the classical 11-circuit labyrinth that was embedded in the stone floor of the Chartres Cathedral in France around 1220. Walking the labyrinth has become an powerful form of spiritual and emotional growth and healing. Many use the practice for self-healing, but Ms. Benedict had an idea to set up the labyrinth as a way for Dan’s friends and supporters to focus their intentions on his recovery from head and neck cancer, and his continuing health.
Supporters can drop in to participate in the walk any time between 3 and 7 PM. Due to the nature of the cloth labyrinth, it is requested that participants bring an extra pair of clean socks to walk in. Donations will also be accepted at this event to help Dan cover medical expenses. To help with set up, donate flowers, or more information contact Judith Ann Benedict at 315-947-5097.

This is going to be a wonderful event and I am so thankful to Judith Ann for setting this up. Once again if you are in the Central New York area I would love to see you. Think Spring!!

Tuesday, March 17, 2009

3/17/09 Happy St. Pats Day


We’re in treatment mode right now and today I finished my seventh day, one fifth of the way thru! The first week of chemo was difficult but not impossible. I have had a lot of nausea and in turn lost about 8 lbs for the week. The oncologist gave me another anti- nausea drug and a new antacid to try out so we’re hoping that will help to take the edge off. We are also trying all sorts of other options too. My energy level has been really low but if all goes well it should pick up a bit before the next treatment on March 30th. Yesterday was a long day. First thing in the morning I had surgery to have the peg tube installed, they gave me fentanyl as an anaesthesia and for some reason it did not put me out at all so I was awake for the whole procedure! Then afterwards we went to radiation, then to the lab to have blood work, the back to the lab and finally a meeting with the chemo oncologist in the afternoon. When we got home I collapsed on the couch. Its going to take a while to get used to having the peg tube, and right now its still quite sore from surgery, but before long I won’t know what we did with out it!! The radiation is slowly dulling my taste buds and drying my mouth but for the moment I can still eat and as long as food taste OK we’ll do the best we can. I am reminded everyday to take one day at a time. Today we had some fun at the clinic because it was St Patrick’s day, and as soon as I get a little more energy {hopefully next week} I’m going to bring in my dulcimer and play some music for both the radiation and chemotherapy clinics.

Today was a beautiful day, sunny and high in the fifties, the snow is nearly gone, the birds are singing and the first sign of flowers are starting to poke up in the ground. We all know what this means, MARCH MADNESS. Yes the tournament starts on Thursday and I’m looking forward to watching lots of games and keeping abreast of all the madness. Last week all the leagues had their tourneys and it was great to watch my team, {The SU Orangemen}, go to the final game of the Big East tournament. But the best part was the historic six overtime win over U Conn. on Thursday night. Stay tuned, fill out your brackets and let the madness begin !! Go Orange.

Once again I am so thankful to all of you for your thoughtful notes and heartfelt concerns. Yesterday was really tough, and when I came home I found over 10 cards in the mail. It really helped to pick up my spirits a lot. This family of concerned friends is growing every day and has touched and humbled me more than you will ever know. On this day as we celebrate St Patrick, I find myself walking the cliffs of Moher by the sea, tipping a pint and playing some tunes at Gus O’Connor’s Pub in Doolin, and Peg and I hiking along the coast of the Dingle peninsula celebrating our success with these cancer treatments! I think Peggy captured it best :

“Talk to me of Ireland,
will we walk there by the sea
I need to think of someplace greener
Will you share that dream with me”

It’s another day for hope and another day to dream.
Thank you all so much again for everything, I look forward to seeing you at 7:00!

Wednesday, March 11, 2009

3/11/09 Who is that masked man !!


Well we have survived the first three days of chemo therapy and radiation. Monday was a rather long and exhausting day. Five hours of lots of intervenes drips, steroids, anti nausea drugs, chemotherapy and then finally more fluids and I was on my way to radiation. The drugs certainly do wipe your system out and it has been a struggle to have much energy. I have been pretty nauseated, had some wild chemo hiccups, and have felt really tired but except for that we are getting along pretty well. Eating is a bit of chore when my apatite is not great but we’re doing the best we can and as always Peggy has been wonderful! I’m hoping that some of the nausea will ease up in the next few days.


I have included in this post a picture of the radiation machine and the mask that is used to keep me in place. The radiation machine moves in arch’s and covers a little different section during each arch. There are a total of ten arch’s { Sometime 12 }, and then the treatment is done. Overall it takes about 30 minutes and this week I have not yet been feeling any adverse effects from the radiation but it is a cumulative process so it should catch up to me in a bit. All the doctors, nurses and staff at the facility have been wonderful and I can’t imagine where else we would ever get such personal care. It is such a comforting thing. They are monitoring me like a hawk and will do blood work every week to check on white and red blood cell counts and any irregularities that may arise. One other great relive this week we were finally able to lock in the prescription drug coverage with our health insurance. After several “misunderstandings” and lots of phone calls we are officially locked in. Next Monday will be a long day, peg tube surgery first thing in the morning, radiation, blood work then a visit with the chemotherapy oncologist. Never a dull moment!


As always I am totally overwhelmed by the response from this wonderful community of friends. As of Wednesday afternoon, “For the love of friends” had been downloaded 535 times. It seems like our circle is growing every day. Thank you so much again for the wonderful thoughts and comments from all of you. It really makes all the difference in the world. I will do my best to keep up with posts and as always I look forward to seeing you all at 7:00!

Saturday, March 7, 2009

3/08/09 A Small Token Of My Thanks


As I have been getting closer to treatment time I find myself reflecting on so many things. I also have been going over all the comments, emails and cards sent by so many of you and words cannot describe how grateful I am to all of you. This wonderful community has meant so much to Peggy and I and has certainly lifted us up when we have needed it ! While thinking of all this last week I wrote a little Air, Waltz in honor of this wonderful community of friends. I aptly named it "For The Love Of Friends" and quickly recorded it with piano and guitar. I have posted a link below that will take you to the tune at box.net. You can play it right there or you also can download it to your computer and in turn to your ipod or mp3 player. It is not very polished but is my small gift to all of you. Peggy put it perfectly in her song "Giving Thanks"
" In this season of joy and thanksgiving
when I look at the life I am living
I count up the blessins of old friends and new
And I am grateful for you
I give thanks for you"

As I start chemotherapy and radiation tomorrow, I will hold on to the thoughts from so many of you and look forward to hearing from you as the weeks progress. Keeps the vibes coming and I'll look for all of you at 7:00!


http://www.box.net/shared/xklgohiyg8
For the love of friends mp3