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.

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.

.

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.

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.

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.

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 !

8/11/09 Small bursts of energy !!

It has been a wonderful week of traveling and performing with some really nice programs. Highlights include Café 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 !!